Daily, chronic pain shows you what you really love. I shed day dreams and wishes and focus on one thing besides my health: I write.

—

New here? Learn more about Inner Workings and to the Lady’s Illness Library here!

I LOVED this conversation with , an extraordinarily thoughtful fiction writer who has been through it. Erica is uniquely able to reflect on how her illness is changing her, even while slogging through the thick of it. Isn’t it wild and inspiring how every single one of the women in this series are deeply wise and also generous with their wisdom?

Erica has an autoimmune condition that affects her nerves, causing shooting pain and loss of sensation in various parts of her body. Like many of us here, Erica is a doer who pursues very cool projects, like creating a magazine with contributors around the world. But after her diagnosis in 2020, Erica was suddenly limited in how much she could do each day.

In this interview, Erica shares how chronic pain forced her to hone in on the most important thing in her life, which for her is writing. Through the painful winnowing of life pursuits that she has had to endure in the last few years, she has continued writing multiple novels, because she identified that act as the beating heart of her life.

Listen to the full interview by clicking play below!

And please join us in the comments! Have life events ever forced you to cut the nonessential? What went out the window and what remained?

Find more from Erica!

• Website: EricaVipond.com

• Instagram: @EricaVipondAuthor_

• Substack newsletter: https://ericavipondauthor.substack.com/ 

• Starling Darling will officially publish in October but pre-order announcements will be shared through my substack in September.

Welcome back to the Lady’s Illness Library! As said to me, “autoimmune diseases always seem to strike the coolest and most interesting women!” So that’s what we’re doing here, talking to them!

“Cool and interesting” definitely describes , our guest this week. Emma is a delightfully personable and extremely driven woman whose career as an air traffic controller was cut short by a constellation of symptoms: chronic fatigue, anxiety, fibromyalgia, vertigo and more. In the darkest period of her life, Emma turned to open water swimming, and she began writing seriously. She got her first book deal at age fifty-one. Her book Breaking Waves, exploring the relationship between women and water, comes out next March.

Meditation isn’t my thing

There is one part of our conversation that has stuck with me since I spoke with Emma two weeks ago. At one point Emma told me offhandedly that meditation isn’t her thing right now, and also that she’s just not a morning person.

These little comments stood out to me because they are the opposite of what I often hear in conversations about living with chronic illness. Even when I am trying remain open and curious, I am often silently registering a list of “should’s”: I should eat more green vegetables, I should go outside more, I should sit less. This particular one, “I should meditate,” has long been a mental loop for me. I know meditation is great for a lot of people like me. But it hasn’t clicked in my life, and that has generally made me feel bad.

So it was refreshing to hear Emma’s attitude: mediation isn’t for me right now! She highlighted both that this is fine, and also that it doesn’t mean meditation will never be right for her, just not right now. In our conversation, Emma talks about how it was so liberating for her to give up the morning routine that she “should do”: get up, drink tea, do yoga stretches, write morning pages…whatever it was.

The goal of all these shenanigans is to get into a calmed mental state and create a mindset where the world is bright and full of possibilities. But the activities that achieve that state are different for each person, and that’s easy to forget. Emma has other activities in her life that get her there–for her, it’s open water swimming and free writing.

This was such a good reminder for me that the menu of options is long, and the goal is to find what works for me, not what works for someone else or even for most people. And what works also changes over time. There is no final, perfect morning routine for everyone forever—it sounds obvious when you write it out like that—but you might be fooled into thinking there is if you ever read the internet.

There’s so much good stuff in here, about wild swimming and ambition and talking about work and rest with our kids. I hope you enjoy it! Listen by clicking play below.

✏️ Meet me in the comments!

• Is there a common wellness practice that really doesn’t work for you?

• What activities get you into that calm, vibrant state of being?

😊 Emma’s links

• Substack: Lemon Soul

• Book: Breaking Waves

• Instagram: @emmasimpsonauthor

“I mean, so many of the things I'm talking about here really are just me worrying about what other people think of me, and I feel like if I could drop that, I would be able to spare myself so much anxiety in life. But it does matter. And I think I know the worst of what people might think because I used to think it.”

—Sara Tasker

is a writer and influencer who used to be, in her words, "properly successful". She racked up book deals, big media interviews, and hundreds of thousands of social followers, until her chronic fatigue and narcolepsy became too severe to deny. Sara shares this experience with us in the latest episode of The Lady’s Illness Library.

In this episode, Sara speaks honestly about the changes she has had to make in her life, her inner critic, and how she copes with the uncertainty of her condition. The conversation is full of honest moments and darkly funny anecdotes that will feel familiar to anyone with symptoms that medicine has yet to explain.

Listen now by clicking play below! Or read the transcript here!

What stuck with you from this episode? I’ll see you in the comments!

Leave a comment

The Lady's Illness Library is a collection of conversations with women who have mysterious or undiagnosed chronic conditions--the types of illnesses that are so common today, particularly among women. Find more episodes here.

Explore Sara’s work!

Entre Nous

Slow living, online business and personal growth - for creative souls and dreamers.

By Sara Tasker - Me & Orla

• Instagram: https://www.instagram.com/me_and_orla/

• Book: https://www.goodreads.com/book/show/40537617-hashtag-authentic

• YouTube: https://www.youtube.com/@SaraTaskerme

This month I spoke with Julia Edelman, the writer behind Eyewitness Newsletter. Julia talked to me about her experience slowly losing her vision in her twenties due to a rare autoimmune disease called uveitis. I particularly love the way Julia talks about grief and joy, and how chronic illness teaches us to hold both at once. She now leads workshops that combine ecstatic dance and journaling (yes, you read correctly, it’s amazing), and orients her days around what she calls “tiny joys.”

The best thing Julia said in this interview? “Every woman I've ever met with an autoimmune condition is, like, so cool and interesting.” AMEN SISTER.

Here are Julia's resource recommendations from the episode and beyond, and the full transcript is available below!

• Between Two Kingdoms: A Memoir of a Life Interrupted by Suleika Jaouad

• Isolation Journals, Suleika Jaouad's Substack

• Love Voltaire Us Apart: A Philosopher’s Guide to Relationships by Julia Edelman (Julia’s book!)

• Julia’s ecstatic dance and journaling workshops

• A health coach who helped Julia: Erika Bustos

• Uveitis support group WhatsApp link

Rachel Katz: 

Welcome back to the Ladies Illness Library. This is a collection of stories about unconventional illness journeys, and in particular, we're focused on those that are riddled with mysterious symptoms, difficult to diagnose and strike in the prime of life. The illnesses we discuss here mostly affect women, and we don't really know why. And despite their growing ubiquity, these illnesses. Illnesses still live beneath the surface of our culture. So we're trying to change that. On this podcast, you're not going to find ten tips for getting better. We're not here to find quick fixes because they usually aren't realistic in these contexts. Instead, we're focused on honest conversations with insightful people. We're trying to get a view into the shapes of these journeys and the way that we make sense of them as humans.

 I'm Rachel Katz, a once ambitious Silicon Valley CEO turned mother. I have dealt with a range of health issues, from autoimmune disease, anxiety, infertility, chronic foot pain, fatigue, and, I guess just what I'll call gut stuff. My Substack, Inner Workings, and this special segment, the ladies illness library, can be found at raekatz.substack.com.

Today I'm talking to Julia Edelman, who writes the Eyewitness Newsletter. Julia started seeing black spots in her vision when she was in college, and she was told in her early twenties that she has an autoimmune condition called uveitis and that she would eventually go blind. Facing this looming darkness, Julia shares with us her winding treatment journey, her experience with ecstatic dance, and how she thinks about the future. I'd love to just start with some things you're doing now because they're so interesting. I want to hear about the idea of tiny joys and what that concept is and how you developed it and how it shows up in your life these days.

Julia Edelman:

Yeah, I started with tiny joys mainly. I think sometimes there's always this need to really feel reminded of, like, everything that you're grateful for, which I think is always a very important practice. But I honestly really started it when it was. I remember it was, I just wanted to put out something on my substack, and I was, like, going through a really hard time where I was honestly really depressed, but I was like, you know what? I can't think of anything big that I'm grateful for, but there are a lot of really small things that get me through really rough days. And I realized, like, that was also worth mentioning. And so even if it was like a book that I was reading or just a phone call with a friend, I found that those were things that I still wanted to share with people, and so I started doing that. And then I think it was just a really good reminder to constantly keep looking at all the smaller things, because that is usually what I think has the most meaning of, like, those tinier moments in, like, everyday life that can bring you joy instead of, like, the big life changing things, you know, sustainable, I guess.

Rachel Katz: 

Yeah. It's almost more relatable, too, to be grateful for a phone call with a friend than my family or my health or these more abstract concepts that we, quote unquote, should be grateful for. I also noticed you host ecstatic dance and journaling workshops. Can you tell us about that? Because that really caught my eye. It's a combination I've never seen, and I'd love to hear what happens at those.

Julia Edelman:

Yeah. So I'm very passionate about this. So ecstatic dance also for those, if you don't know what it is, because a lot of times when I talk about it, people think I'm saying exotic dance. Maybe I'm slurring. Ecstatic dance. It's basically a kind of dance that, like, the four rules, I guess, or guidelines are that you dance and there's no shoes, there's no talking with other people. So it's kind of just pure dancing and, like, communicating with your body. No phones, so you can feel more, like, present there. And no alcohol or drugs, so it's also, like, a sober dance party. And. Yeah, I just. When I first I did it a few times, and every time I did it, it just brought something out in me where I was, like, it feels very primal or, like, the. 

And all the dancing is, I would say, also very weird. Like, it's the best way to describe it is, like, what it feels like to just dance alone in your room, but everyone's dancing like that, and no one really cares about, like, how it looks to other people. And I never felt so, like, alive in my body. And especially this past year, going through just, like, a big journey after being in, like, remission with my health, I went on, like, traveled for a few months, and there was a lot of ecstatic dance where I went. And I found that it grounded me in my body more than any meditation or any practice that I'd ever tried before. And from doing that, of, like, being so present and in my body, I had, like, so many thoughts that I wanted to write down. I would always, like, kind of, like, run off and run to my phone or notebook and try and scribble down everything that I had, like, felt after the dance. And then I felt like it would actually be so nice to share this, like, write it down with the people I'd shared the dance with and even share it with the other people there. And I've been working as a writer for the past ten years, so I was like, yeah, it'd be really fun to just combine them. So, yeah, so I first kind of, like, experimented with just journaling workshops and just doing that, and then started practicing as, like, an ecstatic dance dj and doing that for the past, started for the past year or so, and, yeah, then decided to combine them, and it's been really fun. So, yeah, we'll kind of start it off with, like, an hour, hour and a half of dance, and then kind of join everyone together afterwards for, like, a meditation and some writing prompts, and then people can share together afterwards. So, yeah, it's really fun.

Rachel Katz: 

That is awesome. I'm really smiling very wide right now. I love that you said it was the most present you've ever felt like, what you might be going for with a meditation. I really like hearing about alternatives to meditation to bring me or us into that place, because sometimes I feel like the project of sitting silently and trying to get there, especially if you have a certain brain like mine that's, like, a perfectionist who wants to do it perfectly. Right. That can be actually really difficult to make that practice work for me. So this super resonates that maybe some kind of actually wild movement would bring me or some folks there maybe more easily or in a more joyful way.

Julia Edelman:

Yeah, no, totally. I think it never even occurred to me until I just kept trying it more and more. And then. And it was funny. I was like, even along that same time, I was even staying at, like, a monastery with monks and trying to work on meditation, and I was like, okay, this is what's going to help me. And, like, because I also had that same kind of brain where it's, like, very hard to sit still and to feel calm, and. And then I found that, like, actually the thing that helped the most was, like, walking meditations or something where there was some movement. And then once I started dancing, I was like, oh, this is, you know, it's. Yeah, it's just meditative in its own way. And, yeah, now that just changed my life. Now it's like, even sometimes when I, like, want to work something out, I'm like, okay, I'm gonna push myself to go to a dance that's so cool.

Rachel Katz: 

What kind of music is it?

Julia Edelman:

You know, it's really such a range. It's like, I guess, a lot, I would say it's a lot of, like, world music is the best way to describe it because it's just from all different cultures, I'd say, but. And then it's a big, like, there's always a big, like, kind of, like, works up gradually and kind of likes. And it's kind of slow in the beginning to have people comfortable and warming up through their bodies, and then, you know, in the middle of it, it's like, yeah, all different kinds of genres, and then it's kind of slow again at the end to have people kind of, like, wind down, but it's. It's almost too many different kinds of music. It's overwhelming.

Rachel Katz: 

And the idea that it would unlock writing makes a lot of sense to me, too, because some. Anything that kind of gets you out of your normal screen focus. I love that. Let's go back in your journey a little bit and fill in some of the gaps. So you mentioned that the past year has been a time of kind of rediscovery, and after a period of remission. Tell me about what happened over the last year.

Julia Edelman:

Yeah, I mean, yeah, I could also take you to the beginning as well, if that helps put things more into focus, but. Perfect, but, yeah. But basically, about ten years ago, I was diagnosed with uveitis, and it's a pretty rare kind of autoimmune condition that makes you eventually lose your vision. And so I was told that if I didn't find some sort of medication or fix to this, then I would eventually go blind.

Rachel Katz: 

How did that start? Like, what? What happened that brought you to the doctor?

Julia Edelman:

I started seeing just black spots everywhere that I went. So it's. It's cut. The best way I can describe it is, like, when you look at a car window and there are all these dirt spots on the window, and you just can't, like, get them off. But it was like that everywhere that I looked, and, like, in every direction, the spots would move. So one day they just appeared, and it just got. It was when I was in college, so I was trying to ignore it. I was like, maybe I just drank too much. And then I, like, I was like, yeah, this is normal. This happens to all college kids.

Rachel Katz: 

Like the freshman 15. Like, the black spots in your eyes, right?

Julia Edelman:

I'm like, yeah, that's fine. And I remember even, like, I mentioned it to a friend, she was like, yeah, it's fine. Like, you've just been going too hard. I'm like, yeah, okay.

Rachel Katz: 

Oh, my gosh. The things we are able to tell ourselves when we're funny.

Julia Edelman:

Yeah, it's really scary. And then I kept being like, it's fine, but I was, like, not able to read or do my schoolwork because it was just like, every time I try and follow a line in a book, the spots will follow me everywhere. And then finally, I came home for Thanksgiving, and I remember I told my mom, and she was like, no, we're. We're gonna go to a doctor. That's not normal. God bless moms for forcing you to. I was like, okay. And we went. And thankfully, my neighbor, he was an ophthalmologist, and so we got. We. He saw me right away, except when it was closed around the holidays, and he, like, looked in the back of my eyes, and he's like, oh, like, you tore your retina. And so he had to, like, laser it that day. And because if. If I hadn't gone that day or waited any longer, I could have. My retina could have fully detached, which is, like, the worst thing that can happen, because you'd have to, like, go to surgery to reattach it. So it's really bad. So basically, he was able to laser it so it hadn't gone to that point. But that's when he was like, you probably got this because you have something called uveitis. So that's how I was first diagnosed. But it was a point where he was like, you could just kind of start putting in kind of these, like, steroid eye drops and just, like, watch and see what happens.

Rachel Katz: 

And so what happens with uveitis? What. What's going on in. In your body?

Julia Edelman:

So, basically, the. The reason that, to me, it was for me personally, because there are different kinds of uveitis, it was attacking, like, it was inflammation in the middle of my eye, and so all of the cells were being inflamed. But also, I also had vasculitis on top of that. So the veins in my eyes also were being damaged, and the vasculitis is the part that makes it vision threatening. So plenty of people have uveitis, and it's not as vision threatening for them, but the combination, basically, that added with all of the cells that were blocking my vision were making it much worse for me personally than other people with the condition.

Rachel Katz: 

Got it. So, basically, your immune system was attacking the part of your eye, and then that was causing inflammation.

Julia Edelman:

Yeah. And that's why it was confusing is because it was just like, you know, there were so many tests done and it was just attacking my eyes and no other parts of my body, which was.

Rachel Katz: 

So it wasn't caught.

Julia Edelman:

Right, exactly. So it was like, you know, it was a good thing that other parts of my body were being affected, but also it was harder to decipher what to do because it was so localized in my eyes.

Rachel Katz: 

Got it. Okay. So you get this really scary diagnosis. You're what, you're in your early twenties?

Julia Edelman:

20? Yeah, 20.

Rachel Katz: 

So. So then what'd you do?

Julia Edelman:

At first I was just told kind of to wait and see and kind of try these. Use these eye drops and keep seeing it, trying to find a doctor that can help and see if there's anything else to be done. And I kept. But at that point, I had just known about the uveitis. And I also was, I think, also at that point, I was a little bit not in denial, but I didn't really want to talk about it with anyone or share because I myself, wasn't really sure what was going on, I think. So, you know, it was really confusing. I think I was like, okay, I have this weird eye condition. It sounds bad, but at that point, I was almost getting.

 I was getting used to the floaters because it was just a part of my life. Like, they never went away. And I noticed they would get worse when I would drink or have gluten sometimes. But beyond that, they were just with me forever. And so I tried sometimes, like, changing my diet, seeing if that could help. And then it wasn't until, like, I moved back to New York and I was seeing this one doctor, New York, for, like, two years. And he was just like, yeah, we'll just keep doing some routine tests and, like, changing up the eye drops again because my mom pushed. She was like, I think we need to see someone, like, who really knows what they're talking about. So we took a trip to Massachusetts to see this doctor who was like, kind of like the. I don't want to say the king of Uveitis, but he's, like, written all of the books on it, you know, like, he has his own.

Rachel Katz: 

The godfather of Uveitis.

Julia Edelman:

Yes, it kind of. Yeah, that was the first time I was like. Like, I remember walking in and, like, I was just like, oh, this is like a whole world unto itself. You know, like, seeing all the. Like, there are, like, brochures and support groups for people with Uveitis. And it was a whole building just dudding into that and it was. I don't know. I remember it was just, like, really shocking to see because most people don't know what it is. There isn't a lot of, like, any awareness of it. So I think just to see a whole, like, center dedicated to it was really crazy to me.

Rachel Katz: 

Right. And it sounds like in your life up to that point, it had been kind of this thing in the background that you're kind of trying to ignore and you weren't really telling your friends about it, and you're just kind of letting it lie and maybe trying to ignore it a little because you were in your twenties, right?

Julia Edelman:

Exactly, yeah.

Rachel Katz: 

And there's this whole building. It's like the center for Uveitis.

Julia Edelman:

I'm like, oh, shit. I think this might be, like, a real problem.

Rachel Katz: 

Is that a scary feeling or a relieved feeling or.

Julia Edelman:

I think I was really just really surprised. And also, like, I think also comforted in a way. I was like, okay. Because at this point, I also was still searching for answers, but also didn't want to be there, you know? Like, I. Like, I didn't. I barely wanted to be at that center in the first place. But I could also recognize that the doctor that I was seeing wasn't helping me. And we went to the appointment, and that was the first time I had this test done called an angiogram, where they, like, inject you with dye, and that way it goes straight to the back of your eyes so that they can see the health of your vessels. And that's when they first diagnosed me with vasculitis.

 So that's when they knew that it was vision threatening. And it took two years just to get to that place, which is how I was able to understand. It was a lot more serious than I realized. And I think that's also part of, like, the frustrating whole. A lot of big aspects of this health journey is just like. Like, it felt like, in a certain way, like those past two years had been wasted because I was like, okay, those two years, I could have maybe started treatment for this part of my disease that no one knew to check for. So I think that was another thing. It was also, like. I think it sort of began this kind of need for me to, like, I never really trust the doctors. When I met them, I was like, okay, are you checking for everything? Because if you don't, then it could really hurt me in the long term, because I get it. There are a lot of patients and doctors don't have a lot of time. But, yes, it was really scary to learn, like, oh, there's a whole other aspect to my diagnosis I had no idea about. Yeah. And so I remember I didn't want to. Like, at that point, I was just on eye drops because I was told that it was okay, but at that point, they told me to go on methotrexate, which is like, just a form of chemo.

Rachel Katz: 

They told you to go on a form of chemo, huh?

Julia Edelman:

Yeah. And it's like, methotrexate, it's like a small dose pill form of chemo that they hoped could, like, reset the immune system. And that was sort of the first serious treatment, I guess, that I was on to try and tackle it.

Rachel Katz: 

We're going to keep going through the, going through the story. I want to hear then what happens. But before we do, let's pause right there. So you're like, and now out of, just out of college, you are on this chemo drug. And, yeah, you've written that you spent the first seven years of this whole journey hiding it from everyone except your family and just a few friends and that you didn't want to share in particular because you're afraid of being a burden. And I think that that is very common. I had a kind of parallel timing wise thing. My first health thing was a foot issue that started around exactly the same time when a doctor basically told me I had this foot issue. And at some point it's going to start chronically hurting. Just wait and see. Then it did. 

The way it manifested my life was I was always worried about how far I was walking and whether I was going to, you know, walk too far to overextend it and then have all this pain and not be able to walk and all this stuff and similar age. And I remember the main thing I felt was just so self conscious about how I was just constantly asking how far the next thing was or just trying to, trying to tough it out, not tell anyone. And I remember particularly resonating, I read a quote about how, you know, the pain is so real to you, but everyone else, like, forgets it really quickly, basically. And that was really a big part of my experience. And I had this just huge fear of burdening everyone with my thing. So that really resonated. And I'm curious how that felt for you and how that evolved for you over time in terms of starting to tell people or not keeping it a secret. How did you manage all that?

Julia Edelman:

Yeah, I mean, look, it's honestly sometimes still something I have to, I think, unlearn a little bit because I think it was so ingrained in me for so long. And I think also, sometimes it's really hard when you have an invisible condition as well, because, I don't know. I think it's almost easier to hide. And people also assume that you're fine because they can't physically see what's going on. And so I think it's easier to just pretend or put on this facade that you're okay. And. And I think I. I had this thought that I think, especially with my eye condition, it felt so rare and hard to understand. Like, every time I tried to explain it, people would like, be like, oh, can't you just, like, get Lasik? Or I would try to, like, can't.

Rachel Katz: 

You drink tea for that?

Julia Edelman:

Yeah. I'm like, oh, I never thought of that. Or, like, and this still happens to this day. I'll be like, explain this very rare autoimmune condition that's caused me to go blind. And people are like, would try to relate, and they'd be like, I totally get it. Like, sometimes I put in my contact wrong and, like, it's so hard to see. And I'm like, I have to. I have to try really hard to, like, be patient. Be like, okay, sure, yeah, but. And just not say anything because I don't want to be a bitch, but, like, very, very different.

Rachel Katz: 

It really is like a human. It must be just, we want to relate, so we'll think of anything. Like, I just did it, too. I was like, oh, I had my journey, but, like, yeah, people just want to relate, and it just so often lands so wrong. We just need to practice kind of just listening.

Julia Edelman:

Right? And that's the thing. Like, I want to. I always give people the benefit of the doubt because it's like, yeah, when someone tells you about this really weird eye condition that you have no. And you have no idea what they're really talking about. Like, yeah, they're going to try and say something to, like, that is the closest anyone can think of is, like, putting in a contact, weirdly. But it was. But to hear that over and over again, I was like, at a certain point, I think I just kind of, like, shut down. And I was like, I think I'm just gonna just keep this to myself also, because, I don't know. I think at that point, I really was just sharing it with my mom. I mean, people in my family knew, but my mom was really the one who, like, was going with me to doctor's appointments and, you know, helping me figure things out. And I mean, I would tell, like, some good friends or, like, the roommates I was living with at the time because they would see me going to doctor's appointments, but I would give them just, like, the bare, brief, like, synopsis. 

Like, yeah, I have a side condition going to the eye doctor today because I just, I think there's a part of me that maybe was in denial, but also I just didn't want people to also see me differently or see me as, like, weaker. And I think I was also afraid that people wouldn't understand, so I just didn't share it at all. But now, like, thankfully, I. I see it so much differently that, like, sharing parts of yourself is actually just a huge part of just being alive. And you shouldn't feel afraid of or ashamed of, like, these weaknesses or these parts of yourself or even to see them as weaknesses. But I think for most of my life, especially, yeah, early twenties, I wanted to feel, like, strong and capable. And everything about my illness made me feel so distraught, really. And also the emotional effects of it. Like, I just was so. Felt so isolated and depressed from having such a rare disease that no one understood and even my own doctors didn't know how to fix. So, yeah, I think in my mind, I was like, it's better not to burden people with these heavy emotions and just, it's stronger to just keep it to yourself. Like, that was, it was protecting the people in my life in some way.

Rachel Katz: 

It's kind of counterintuitive that you'd, in that context, try to protect the other people. But I think we, that's really, really common and supernatural. It's especially, you know, in, at that age, I mean, this happening in your twenties versus in your forties is a totally different experience because at least in my life, there weren't people around me who were going through kind of the types of experience that make you face your mortality, for lack of a better word. Like, it sounds like you got this news that you are going to go blind, probably. How did you kind of process that at the time? Did, were, were you thinking like, oh, I have a certain amount of time left to see? Were you thinking, nah, I'm in denial? Were you, what, how did that work in your mind to hear that at that point?

Julia Edelman:

I think it. I think sometimes I would try and push it from my brain. And then when I went back to doctor's appointments and they were like, every time, it just was always progressively worse news, I would feel the weight of it again. And because the best way that I remember when I first saw the king of uveitis that one time, and he put it in a way that was like, it was very visual, but it's the best way that it's stuck with me since, where it's kind of like water on rock, where it's like it's just slowly eroding. And he was like, you're not going to go blind today or tomorrow, but gradually your vision will be deteriorating to the point where if you don't do something, it will be gone. So I knew it was, it was always just kind of like this cloud hanging over me. Like, I knew it was coming, but I was seeing doctors so actively that I was like, okay, there's going to be a way to fix it. And then progressively, no, every medication didn't work.

Rachel Katz: 

And, yeah, let's go. Let's go back to the, to the story. So you, after the chemo, that sounds like that didn't work. So then what happened?

Julia Edelman:

So I was on that for a few years, and then it just was, yeah, I was just feeling nauseous. It was affecting my kidneys, but it wasn't helping my uveitis, so they took me off of that. And then after a few years, I switched care so many times because I was just always looking for someone to give me the answer of what to do. And no one ever really knew. At a certain point, when I was told that the, like, methotrexate wasn't working anymore, I was living in Los Angeles, and it was also during, like, peak Covid. And so it was kind of like a, like, my doctor told me that my vision was getting worse. Like, everything had just shut down. It was like March 2020. And I was like, okay, I think I'm just going to fly back home to New York for, like a week and just be with family and settle myself. And I went, and I just never went back to LA for, like, like, I stayed there for the next two years. I had very classic Covid stories. Exactly.

Rachel Katz: 

Flew across the country, never, never went back. And then when I went back to.

Julia Edelman:

New York, I was like, okay, I'm going to try and find better care in New York. And me and my mom found this doctor that I'd seen once before when I lived in New York, that was in Johns Hopkins in Maryland. So we would make the drive every month and a half to go see him, which is 8 hours every day, which is, it's a long drive to do in a day with doctor's appointments, but we would do that. And it was a lot of trying different medications, putting me on different immunosuppressants for the next year and a half, until eventually he had tried every single immunosuppressant that he could think of. And so the only last option was surgery. And so about a year and a half into being in New York, they decided to operate on my eyes. And then I was, for the next year or so, going through eye surgeries and recovery for that.

Rachel Katz: 

Oh, my goodness. And it was Covid.

Julia Edelman:

Yeah, and it was Covid.

Rachel Katz: 

There's something that's really terrifying about the idea of COVID where it's like suddenly you can't touch anyone, you can't breathe. The air is dangerous, going inside is dangerous. And then also at the same time, like, your world going black, literally. I mean, I can't even imagine.

Julia Edelman:

Yeah, it was the combination. Also being in hospitals, like, so often, you know, just, you were like. You were already always in mass, and then it was like, added fear when you were in the hospital, and you.

Rachel Katz: 

Probably had bandages on your eyes a lot.

Julia Edelman:

Yeah, it wasn't. It wasn't a good time.

Rachel Katz: 

Yeah. You've written about how you couldn't think about the future because it was like, too. You said, I. I'm incapable of thinking of the future because I'm worried about what happened to me, what might happen to me. My health could change at any moment. That idea of worrying about the future is very familiar, but for you, I think it's been way more constant and heightened and kind of acute because of how just, like, concrete, the process of losing your vision is. I mean, it's just so kind of visual, for lack of a better word. Like, it's so concrete and it could be used as a metaphor for any other illness. Right. Like a slow darkening. Yeah. I'm curious, in that period, kind of how you thought about the future and how that's changed to today.

Julia Edelman:

Yeah, I think it's been a gradual change. I think in that time of peak Covid surgery, seeking treatment every day to find ways to save my vision, I was really obsessed with escaping, or, like, I told myself that I was going to move to France and that I was going to. Like, I kept telling myself the surgeries were going to end soon and my eyes were going to be okay and I could have a fresh start somewhere else. And then every time I thought that I was better, something else would come up and I would have to stay and go back into surgery or having something else get taken care of. And so I think at a certain point, I just was fixated on, like, having a plan, even if I knew it wasn't going to happen. But also. And I think in a certain way, like, I don't know, I. Yeah, I was focused on this plan, but at a certain point, I. I couldn't plan anymore because everything kept falling apart so often that I just stopped planning altogether. Like, I think I just didn't want to be disappointed anymore or have any expectations for my future because every time I would build up an idea or get excited in my head, it would fall apart. And I don't want to say I still feel that way in the sense that I don't. 

Like, I truly do believe that things will work out. And I always think you have to go into things with a positive attitude of, like, so you know that things will go right if you're trying something new. But also, when I still plan something, I just know that nothing's ever a given because I think I'm. I've had so many things change due to different medical issues that it's hard for me to see beyond the present moment because I never have. I do always have this underlying fear that one, I'll need to go back to the doctor or the hospital for something, or that my health will get worse. And it's hard. I don't want to navigate from a place of fear that things will get worse when they've been better for the past year. And I'm so grateful for that. But it's also a very real thing that, like, you know, I know my health could change at any second. So it's hard to sometimes plan beyond the next, like, week or month, because I don't want to be disappointed that something will work out.

Rachel Katz: 

I guess it makes sense why you came to these concepts and practices of tiny joys and ecstatic dance because those are just so in the moment, they're, you know, not in the future. I mean, for at risk of sounding cliche, it's like, basically you. Sounds like you naturally gravitate, gravitated toward these certain things that bring you super into the present instead of a master plan for world domination. Ten years over. The ten year plan.

Julia Edelman:

Yeah, exactly. Like, like, for today, I'm like, I'm all in, but five year plan, ten year plan. The idea that terrifies me because I'm like, I have no idea what. I mean, no one knows what their life will look like tomorrow also, or in a week or a month. But I think after so many years of my life changing so precariously, I. Yeah, it's very hard to plan for anything too far in the future still.

Rachel Katz: 

So you mentioned that the last year has been better. And where we left off, you had tried every medication, you had had all these surgeries, you're in and out of the hospital. So fill us in, what happened between then and now.

Julia Edelman:

Yeah, so, essentially, for the quick synopsis, I had about, like, five eye surgeries. And so in total, they basically. So the way that they were able to calm my uveitis was they inserted something called reticert, which is like a steroid in the back of my eye. So it releases. It's like a. It releases steroids in the back of my eye, so it calms down the inflammation. And on top of that, they were also. They also put in cataract lenses because the steroid was just within a month or two, the steroid was so powerful that it would have given me cataracts. So they just, within the same surgery, also gave me cataract lenses. And then they also did something called vitrectomy, which is where they removed all the cells that I was seeing. So all of those black spots that I was seeing. So for the past seven years, they, like, physically removed them in the surgery, which was, I think, honestly, the craziest part of all of it, because, I don't know, I guess being told so I was going to lose my vision. It only felt the most tangible when I could see the spots, and because it felt like, literally like a danger warning. Right. Which was constant.

Rachel Katz: 

A constant.

Julia Edelman:

Which was constant, yeah. So being able to, like, open my eyes after surgery and not see floaters was really, really crazy. And on top of that, the fact that the surgeons were, like, shocked at how many floaters there were in the back of my eye, they're like, I don't know how you were functioning. So it was such a relief to hear other people be like, oh, yeah, I saw that thing that only you've been able to see for seven years. Wow. I'm not crazy.

Rachel Katz: 

That is. That's really profound to have that. Yeah.

Julia Edelman:

So that was really nice. And then on top of that, they also had to do. They had to insert glaucoma valves to just kind of control the pressure in my eyes so that the steroid doesn't make the eye pressure go too high, because that can also cause vision loss. They do about five surgeries, but it was over the course of about a year and a half because they had to do one eye and then, like, I'd have to wait, recover and do the other eye. And so it kept going back over and over. And, yeah, I mean, that experience also itself was very isolating because I was. I moved back in with my parents because I couldn't do any. Like, after the surgeries, I couldn't lift anything. I couldn't really see. After each surgery, I. I had to regain my vision slowly over a few weeks, so I needed a lot of help. So it was really nice to be taking care of my family, but it was also tough to just be, like, you know, lying in bed a lot of time or not being able to do as much as I wanted to. And then after I was eventually given the okay that my eyes were more stable, like, at that point, I was seeing a doctor every day to every week and maybe every once every two weeks. And then finally once it had gone to every three weeks, I asked if I could travel and leave New York, and they said yes. And at that point, a friend of mine was going to Bali, and so I was like, okay, it's a long shot, but I went. And, yeah, I tried to go for, like, a few weeks, and then I ended up staying there for, like, seven months.

Rachel Katz: 

Yeah, you've written about kind of that choice to leave the place where it all happened and kind of how the experiences were tied to that place. And I'm curious to hear more about that, what it meant to you to kind of get out of dodge and what that did for you and the recovery process.

Julia Edelman:

Yeah, I mean, it's really funny because in leaving, when I was leaving and when I was traveling, I remember, you know, when people ask where you're from, and I'd say, New York. And people be like, oh, New York, so cool. Like, you're gonna go back there when you go back? And I would just always say, like, I'm never gonna live in New York again. Like, I never wanted to go back because I had such horrible memories of, like, you know, just. Just non stop medical appointments and surgeries. And then when I came back from traveling, I ended up getting another diagnosis for Ms, so I had to end up staying in New York again. So that was the other thing. Like, it felt like I was always in New York against my will, you know, like, I didn't. Like, I think I. You know, I probably would have loved being there if I wasn't in surgery or if I was choosing to be there of my own accord. But because I was always there because I needed to stay there for medical treatment, it started to just feel like a prison a bit. But then, I don't know, I guess a funny thing happened where this time around, 

I guess I had to stay in New York this time to wait to get an infusion approved, and it was taking a really long time. And so again, I just kind of put off any planning for the future. And I was like, I don't know when this infusion will be improved, so I'll just stay here and embrace being here. And then I think I finally was able to enjoy it in a way of trying to see it differently. And also, turns out New York can be great when you're not in the hospital. But I'm shocked. But I don't know. I mean, it was an interesting thing when I think first navigating it, there are certain streets or areas of New York, if they're near the eye hospital, that I still won't go too because I'll just, it, it's too hard to see. But I think over time, I think we've been able to recreate new memories there and find new communities, and that's been really surprising, but really nice.

Rachel Katz: 

Wow. Yeah. Quite the return home story there.

Julia Edelman:

Yes.

Rachel Katz: 

And then I returned home changed. It's so funny how, like, similar these arcs can be. It's like, I think it's really beautiful, personally, that so many people can go through so many different crazy experiences with health, and, I don't know, this, like, this shape that it takes tends to at least echo each other. There are some similarities and some ways we can connect even when the particular illnesses are super different. Yours obviously is really unique. How would you characterize your state of mind now?

Julia Edelman:

I guess being able to more lately, I've been able to learn how to hold grief and joy together because I think so much of the time, especially, like, you know, focusing on the tiny joys, it's, I think after everything that's happened and there's been a lot of hardships. So I always think, you know, it's good to stay positive and to focus on all of the good things in my life now that I'm thankful that I'm in remission. But then sometimes I also still get really sad and there are still moments where I still feel really triggered or overwhelmed by tiny things that shouldn't get me so upset, but I think are just, you know, related to just being traumatized for ten years.

Rachel Katz: 

Like what?

Julia Edelman:

Just, like, just, like, seeing any eye doctor, like, just buying glasses, I'll just, like, burst into tears. And it's, I guess it's sometimes a reminder like, that it's okay to feel both grief and joy at the same time. And it doesn't, like, my grief doesn't negate the other because I think sometimes I just. I don't want to feel, like, ungrateful for how far I've come. But I also think it's okay to allow myself to feel these bits of grief or, I don't know, sometimes even though. And maybe it's a small. It's a small thing because now I have my vision, but, you know, from all the surgeries, like, my eyes sometimes will look, like, really red or. Or just, they have, like, still scars from the surgeries that. It's funny, no friends or family will ever say anything, but when I'm somewhere where it's, like, a total stranger, they'll be like, what happened to your eyes? To the point where I'm like, okay, so everyone, my life is just, I think, really polite. Because then when I ask friends, they're like, I promise you, no one can notice when I go somewhere and meet someone. I don't know, they're like, are you okay? And. Or. But even my own eye doctors, like, I've had eye doctors where I see them, and I'm finally so happy that my eyes are better. And, like, they'll look at my eyes and they'll be like, ugh. Like, this makes me so sad to look at. And I'm like, thanks. But also, you're offering no solutions because it's just too late from the surgeries. So I think sometimes I still feel a bit. It's like a. It's weird, I guess now it's like the. The condition isn't as invisible, but there's still the scars from afterwards that I still sometimes make me a bit sad. But it's hard to hold that with also these feelings of, like, joy for being better and to hold them side by side. So I think it's. Sometimes it's just a practice to. To be like, yeah, you can feel both those things, and that's okay.

Rachel Katz: 

I think you also run a community for people with Uveitis or you run support groups, is that right?

Julia Edelman:

Yeah. I started running a support group that. When I was really, like, a bit, like, really in the midst of treatment and that we haven't met quite as often or kind of turned into more of, like, an online group. But I'm also part of a more active support group just for more, just chronic illness in general, with about eight other people, and that one is a bit more regular. But I found that being part of both those support groups have really changed my life because for so many years, I wasn't sharing any of this with anybody. And then I've been able to find, you know, the first group of just the one with people with different chronic illnesses led me to wanting to create this group for people with Uveitis, because at first I found, like you said, like, so much, I was able to relate so much to the other people in the autoimmune groups, even though they didn't share my disease, that I. I remember thinking, like, wow, what would it be like to speak to other people that also have uveitis, even though it's harder to find? I guess sometimes with the Uveitis groups, it would feel. It feels hard sometimes for me also to. 

I guess I always have this urge to want to help and or, like, solve the issues. And when I hear of other people, because there's so many different kinds of uveitis, and I think sometimes when I'd hear everyone's different, particular issues, I'd feel kind of really helpless hearing all the different ways that people were suffering, and I had no real way to help. I had recommendations for different doctors or maybe different things that they could try, but it was almost. I actually found it was almost harder to be in a support group with people with uveitis because it felt so personal. And I felt, I guess, it was hard to not be able to find solutions for people that I knew were, like, suffering in the same way that I was.

Rachel Katz: 

Yeah, I think support groups can be so helpful, and at certain times, they can also be damaging. I mean, to have a lot of exposure to other people who are going through problems that may feel too close or too similar, but I personally have had super, super positive experiences with support groups, too. I'm curious, just because listeners might be interested how the chronic illness support group is organized, is that through an organization or how it's set up so that in case people want to replicate something like that? Can you just describe how that works a little bit?

Julia Edelman:

So, yeah, so with the UVI, this one, that one is organized through WhatsApp. So anyone could contact me if you have uveitis, and I'd be happy to add you to that group. And then with the other chronic illness, one that was actually started with. From a friend. A friend from Los Angeles actually invited me to it, and it just started as a group of friends that knew each other from Austin and then grew because they would add other friends that they. Other, like, friends that they found that also had autoimmune conditions. And so it slowly grew, and it still is pretty small, but it kind of, yeah. Started as a group of friends, and then slowly the circle widened to just because, you know, a lot of really interesting women in their twenties apparently all have chronic illnesses.

Rachel Katz: 

Well, and hence the thesis podcast. Yeah.

Julia Edelman:

Yeah. I don't know why.

Rachel Katz: 

Interesting young women with autoimmune diseases.

Julia Edelman:

Yeah, I mean, the support groups are always great. They're very entertaining. I don't know why. Chronic illness loves really fun women, but, yeah, that's the general theme.

Rachel Katz: 

Awesome. Well, if anyone listening wants to try and connect with people to do something like that, just make a shout out in the comments. It might be a good place to connect. And, I mean, there's so many more things we could talk about, but we're kind of on this theme of finding community, finding information, and just ways to relate to other people, not feeling so alone and, you know, you're a writer. I'm curious if you can talk about any other writers who. Who have influenced you or just kind of also bolstered that sense of knowledge and understanding and connection and relatability for you.

Julia Edelman:

Yeah, I mean, I. That's part of one of the reasons I really loved being on Substack. At first, I only started my newsletter because I wanted a way to share what I was going through instead of just repeatedly texting the same update to a handful of friends. And then I think after being able to share, like, through writing and be able to connect to more people, I think that's led to me being able to read so many great sub sachs and realize that there's a whole community out there. And one, I mean, I've really been loving Salika Juad's like, substack and her book between two kingdoms, I think really, I don't know, expresses. Even though she discusses her battle with leukemia, I think it covers so much of the emotional turbulence that I've felt and can relate to, and I like that. She also, on Substack, has this way for everyone to show gratitude as well every week. So I think it's. I really enjoy that. It's a way for, I don't know, other readers to join in and find that community that way. But honestly, I am always searching for more ways to connect with people in the autumn community just because it's hard, like you said, when everyone can have their own specific illnesses and they all echo the similar stories, but even if they're not exactly the same, I think there's so much to be learned from each other. And so I am always looking for a better way for. For people to connect. And so sub sac has been great for that so far, but yeah, always looking for new ones.

Rachel Katz: 

Cool. Well, thank you so much, Julia. You can find Julia's Substack at Eyewitness newsletter and we will link to that in the show notes along with the other sub stack she recommended. I really appreciate your honesty on all of these topics and your willingness to come on and share your story. I think people will find it really resonant in a lot of ways. I know I have. Well, after talking to Julia, I am definitely inspired to think about how to hold grief and joy at the same time. I love that idea and it's a little bit counterintuitive because I think it's easy to let one of those emotions push the other out instead of having both exist simultaneously. Actually, it does seem like ecstatic dance and journaling might be a great place to start holding grief and joy at the same time. In reflecting on Julia's concept of tiny joys, I think that I can learn a lot from my two and a half year old son who takes such immense joy in the littlest things today. He shrieked with joy when he saw that his favorite red striped undies were clean and available for him to wear. So I am going to work on channeling that energy today. You can find more on my substack inner workings at raekatz.substack.com. Julia's newsletter and additional recommended resources are in the show notes. See you again soon.

Rachel Katz:

I think my favorite thing you said was, like, that, wow, it's crazy. Autoimmune disease love really awesome women in their twenties.

Julia Edelman:

It's literally true. Every autoimmune, like, every woman I've ever met with an autoimmune condition is, like, so cool and interesting. I'm like, okay.

Rachel Katz: 

I also think that, I mean, this is, like, I'm obviously biased. I'm, like, interviewing people. But I think that these diseases make you more interesting, too, in that they force you to, if you have a curiosity, you know, they force you to become someone like that you may not have otherwise been and may not want to be and definitely not like, oh, thank God, I had this disease. Now I'm like this great person. But I do think they push us, like, in terms of how we think about the world, how we think about relationships and their future and goals and everything. And so I do think, like, people who, like, are inclined to think deeply and then get an autoimmune disease, like, tend to be, like, super, super, super interesting. I agree with you.

Julia Edelman:

Yeah. I mean, it's funny, like, I always. Now I always say, like, as much as, you know, I don't. I'm not happy that I have this condition, but also, if this hadn't happened to me, I don't. I think my life would honestly be a lot worse for it because I think it's also opened up my heart in ways that I think I never would have done if it hadn't been for this condition. And also, I don't know. I think it's made me learn how to lean on people and be more vulnerable in a way that I think I would have kept to myself a lot more if I didn't, like, literally need help and was forced to ask for it. And that was part of when I got the second diagnosis for Ms, I was like, my first thought was like, maybe I always am trying to find, like, a reason for something, but my first thought was like, okay, what is the universe trying to tell me with the second diagnosis? And a part of me was like, I think it's just helping me deepen my practice and learning how to reach out to people and listen to my body, and that's just, like, the journey that I'm on.

I’m excited to share that this interview series is now available as a podcast wherever you like to listen! I am hoping that the audio format will be accessible to more people, and also will better capture the essence of these wise conversations. You can still find the edited transcripts from earlier installments here.

This month I spoke with , a vibrant member of the Inner Workings community and the writer behind the newsletter Warrior Within.

Amber is someone who has gone deep in learning about her illness, which centers around debilitating migraine with follow-on chronic fatigue, fibromyalgia and tinnitus. She has changed nearly every aspect of her life as a result, from where she lives to what she does for work.

As someone who has personally struggled to strike a balance between taking action and accepting what is, I was curious to talk to Amber. It’s not clear to me how to take responsibility for working on my illness without some serious self-blame when things don’t go the way I want. In this vein, I appreciated many of Ambers thoughts and experiences, like what it looks like to start with a teeny tiny change rather than a big overhaul, and how we might reframe our quest for control over our illness into an opportunity to create health. For me, there are times in my journey when I want to take actions, and times when I need to step back from action. Amber, conversely, has been continuously empowered by working on her health, and I loved hearing that perspective.

Unsurprisingly, as an avid researcher, Amber has a plethora of resources for anyone interested in going deeper on these topics. Her full list of resources is at the bottom of this post.

Thanks for listening, and Amber and I would love to meet you in the comments section!

Rachel: 

Today I'm talking with Amber Horrox, who was debilitated with migraine in 2018. She also lives with chronic fatigue, fibromyalgia, anxiety, and tinnitus, none of which have been diagnosed by a doctor. In our conversation, Amber talks about the moment she woke up to the fact that she was actually disabled and her intense realization that her health matters. These moments sent her on a journey of research and life changes that continues all the way to today. You can read more on her Substack, The Warrior Within, which is linked in the show notes. 

(to Amber) 

In your words, at the highest level, what illness do you have?

Amber:

I lived undiagnosed with migraine disease for 20 years. I told the doctors for that time period, every single time, that migraine was what it was. And by the time I was officially diagnosed, I was chronically ill. And then a few months later, my dad died. And three months after that, I was completely disabled by the illness, unable to work, left without any mortgage insurance, any sick pay, or any immediate family to help. So it was pretty tough.

Rachel:

Pretty tough sounds like a bit of an understatement. Yeah. Yeah. Let's dive into that comment you just made that you're unable to work. I've seen in your work, it was around 2018, right? You were unable to work. And, you know, I think many of us have had to take time off work to deal with illnesses, this type of illness. One thing I loved in your Substack, warrior within, you've written about how it's like, impossible to describe what you do all day, right? When you have this kind of illness and you don't work and, it just feels awful to try and describe it. And I'm curious if you can tell us how you talk about that now.

Amber:

It took me four years to write that blog that you're talking about specifically, four years to be able to answer that question: What do you do all day? And when I look back, I can really see how limited my function had become and how I was really disabled by the illness a lot of the time. And if not completely disabled and laid up bed bound by it, I was debilitated. Back then I physically couldn't express or communicate that to anybody nor the severity or the seriousness of the illness. And, yeah, a lot's changed in the last few years.

Rachel:

And what were your days like during that period?

Amber

I feel like a lot, in my own personal case, I feel like I had what I now see as like an awakening. I feel like I woke up to the seriousness of that illness. The days I was bed bound, I physically couldn't get out of bed, like I was in what I now recognize as very severe and very agonizing pain. But again, I couldn't communicate that to anyone. So the rest of the world thought that I was in bed with a headache. But the reality was I physically could not get out of bed and I would focus a lot on the pain. But really I had probably about 20 to 25 other symptoms as well that were perhaps entirely debilitating on their own, separate to the pain. 

So, yeah, on those days, obviously, I couldn't get up. When I could get up, I was journaling, I was researching the condition, keeping open to making changes, just really little changes without any pressure or stress on myself. Learning to drown out the noise around me, that really helped a lot, drowning out the noise of everyone around me, you know, like what my boyfriend was saying, what my friends thought I should do, what work thought the problem was, and really tuning into my own inner knowing. So there was a lot of that happening around that time. And I look back now and really I was learning to let my body lead the way, which I can see why I got the response at the time. I couldn't understand why no one understood or no one appreciated why I was doing what I was doing. It's only now that I look back, I can see how radical that looks to kind of drown out the noise around, tune into your own and knowing and allow your body to lead the way and allow that kind of guidance to determine your next step forward.

Rachel:

We're going to go back to that theme, but before we do, just so that we have a sense of how big the shift was in your life. What were you doing before? What did your life look like before this period? Because it sounds like it was quite fast paced, and I'm curious to hear you describe it.

Amber:

Oh, yeah. It was 100 miles an hour. Arguably, I would have been described as really successful in my career. I worked hard, played hard. I worked very long hours in a fast paced, target driven, highly pressured, stressful environment. And I partied all weekend. Yeah, I knew no bounds, and I literally didn't stop. You know, I was on the go, go, go, go, go all the time. I was. My plans, like, I had plans, like, up to a year in advance. Like, my life had just got so busy, and so full on, there was no room at all for rest. I was dismissing my illness as much as, you know, the doctors were and just really ignoring it and not voicing that to anyone. And I've even, you know, for all that time, I didn't even share that with any of my friends. What the reality was like for me behind closed doors, when I wasn't able to kind of step out in the world and be what other people saw as highly energetic, like, the most positive person I'd ever met in their lives, that would be the compliments I would get. But really, I was living a life of fatigue, you know, kind of fueled and propped up by caffeine infused energy drinks, coffees all day, drinking all weekend. Yeah, it's a very different life to my life than my life now.

Rachel:

At the very beginning, you said “I would have been described as very successful”. It's a really interesting way to put it, and it really resonates with me. Right? In your mind now, in your heart you wouldn't call that success, but other people would describe it as success. And that's a really hard external perception to let go of. And it sounds like it's been a process of letting go of that for you.

Amber:

It was one of the hardest things, actually, was I didn't recognize it as grief. Now I see in the chronic illness community, it's described as grief. I had no idea that's what I was feeling or experiencing at the time. But one of the hardest things to let go of was that, that life, that lifestyle, that career, that income, you know, my job and everything, it was a really, really, really tough, tough time.

Rachel:

Yeah. And along with that, I mean, you mentioned that your friends and other relationships knew you at this, as this certain type of person. And you've also written about how relationships can be really hard to navigate with chronic illness. This is a theme that comes up over and over again in my conversations, and I'm curious what the hardest part of that was for you. What did those, the kind of breakdown of those relationships look like for you?

Amber:

Gosh, the hardest part of the relationships? Saying no, I think saying no. Yeah, that's come up a few times, because previously I was that person that said yes. I was there for everything. I was at every party, every invite, every time somebody needed me. And when I had to kind of reverse that and flip it all upside down and really prioritized me and my health, that had to change. And that was definitely a different, again, when I look back, that was a different version of me that people were not used to seeing that someone who said no, and I can't, I'm not coming out or I'm not able to make it today. Yeah. That was a different side that people would see of me that they hadn't seen before. I've been really fortunate in some friendships where we've been able to have that conversation and they've been able to express how upset and hurt they've been and give me space to share, actually, this is my lived reality. This is what I've been living with. I've been living with it for a long time. I just didn't used to say anything, and I would always be there, and that's no longer possible.

Rachel:

So the conversation was basically them expressing to you that they've been hurt and upset by your kind of disappearance or decreased engagement. Is that right?

Amber:

On occasions, it didn't all. It hasn't worked like that with every kind of friendship or relationship, but on occasions, yeah, that's and I'm grateful for that because that, you know, as we know, that doesn't happen too often, but it has happened with some of mine.

Rachel:

Yeah. It kind of changes the types of people you're able to be in a relationship with. I had chronic foot pain in my twenties, which is kind of unrelated to all my other things. But people in their twenties don't really understand the notion of something that hurts all the time. And so it is so easy for that fact of the pain to just fly out of everyone else's minds. But obviously, it's always in your mind and that distance between what it seems like you're thinking about or I'm thinking about what seems like the person across me is remembering about my experience was so hard for me. So, so hard for me. And it sounds like you've worked through that with some folks and not with others. 

Just going into your actual illness area, set of diseases. I don't know exactly what to call it. In these cases, but migraine is at the center of it, and then there's a number of other things around it. From reading your work, it sounds like that you have just done an extraordinary amount of research into migraine, particularly, to inform your journey. You've mentioned a few times every doctor telling you it's not migraine or essentially, basically getting no external expert help. And I'm curious, what prompted you to start going down that research journey and then how did that go for you? 

Because what's motivating this question is, in some cases, I have felt very empowered by research, and in other cases, I've just felt like this is not my job. I'm not an expert. I'm not supposed to be having to become an expert in this. So I'm curious what your experience with it was like.

Amber:

Again, it kind of came from the place of, like, where I did find myself in the difficulty in the position that I did and feeling like I did wake up to the severity of the illness. I remember that same week when I realized that I could physically no longer get out of bed and go to work at 02:00 a.m. in the morning. I wrote in my journal, “I matter, my health matters. I know I need to make changes. I know changes are what it is going to take, and it is going to take me a long time.” And I think that really became like a foundation and an anchor for me. I'd read a book called Seven Habits of Highly Effective People by Stephen Covey, and I really feel, I felt very connected to that. 

One of the habits is to start with where you are and work with what you've got. So even in that kind of desolate and desperate place, that is pretty much what I did. I started with where I was and worked with what I had. And at the time, it was really minimal information. So one of the things I'd become aware of was that I was at higher risk of heart disease and strokes and things like that. And I just flipped it and asked myself the question, what can I do to reduce the risk of this happening to me? I also was aware it was an anti-inflammatory disease. And it just felt really obvious to me that it was an anti-inflammatory disease. Right. Okay. What I now need to do is reduce the inflammation in my body. And I started off that way kind of step by step by step by step into the unknown without everything figured out or worked out. And I did, in the first instance, find the research pretty challenging, you know, not so easy to come by. 

But once I got through to The Migraine World Summit annual event, and watched it that year, that kind of changed things for me. And I'd say it was probably more at the point where I broke the chronic pain cycle. That was then, when I then found it fascinating, and I really, really, really became interested in the research and the understanding of what I was living through. Plus, it also felt like I had no other option. I had no other choice, no other way out. I'd been hanging around waiting for someone to come and rescue me for years, you know, like desperately wanting and wishing, you know, doctor, specialist, boyfriend, someone, anyone. I wasn't fussy, you know, to come and just sweep me off my feet and tell me that everything would be okay and that they would take care of me and look after me and pay for all the bills and all the things that I was worrying about the most. And I think when I realized that nobody is coming, I have a 700 pound a month mortgage with no income. I'm now considered disabled. You know, it was big wake up call for me, and I do feel like at that time, I really did take back, it was a very, very, very uncomfortable moment, but I do feel like I took back the reins of creation for my own, my own life, my own health. And that was a game changer in that. Yeah. And I've been fascinated by it ever since. I don't understand why there's such little interest in it. I appreciate it's deeply complex and very misunderstood, but, yeah, I'm, I'm absolutely fascinated in it. I've kept, you know, continuing the research now, and I'm sharing more and more with my readers.

Rachel:

Yeah, it's fascinating that you describe this specific moment. It sounds like when you had this realization that you matter, that your health matters. That's not the experience I had. It wasn't a specific moment, but it's kind of an overtime thing. But I've heard this from other people, too, you know, a moment of realizing it, you know, I was sitting on the couch, and I realized it was 02:00 a.m. And I realized that my health mattered. And I'm curious why you didn't believe. You think you didn't believe that initially. Why don't we believe that already?

Amber:

Gosh, that's a good question, isn't it? I can't answer on behalf of everyone else, but I know for me personally, I treat myself like I didn't matter. You know, like I lived my life like I didn't matter. Like it was. I don't know, like I was disposable or something. You know, like, I just. I don't know why we don't believe that, because I do believe that when we do, you know, we approach our life, our health, our wants, our wishes, our desires, you know, our vision for the future in a very different way. But, yeah, I don't know why we, why don't we treat ourselves like we matter, because we really do matter. My belief is I matter. You matter. The world matters.

Rachel:

So through all this, you have transitioned your career toward helping other folks who are on these similar journeys. You know, it sounds like from your story, and this is very familiar to me, too, it was only after you felt you started feeling a little better, then you were able to do more research, then that helped you feel better. And it sounds like somewhere in that process that you also wanted to start sharing this with other folks. At what point in your journey were you able to do more than dig yourself out, essentially, and work on treating yourself in a way that would promote your health? When did that happen for you?

Amber:

Straight away from that kind of, like, disabled state. So one of the changes I made straight away were things I couldn't do, like drink alcohol and drink caffeine. I physically couldn't do either. So I decided from, from that kind of bed bound state. Right. That's it. You know, like, no more drinking alcohol, no more drinking caffeine. It really was a feeling. I talk about it a lot, like, feeling my way forward. Like baby steps. Really teeny, tiny baby steps. I'd heard about going gluten free, for example. When I asked my neurologist, he actually said I wouldn't bother, but that change within had already happened. So I went away, and I just started checking out items in the, you know, in the supermarket, looking for things that were gluten free, that were, you know, more natural products. Hadn't made any big decisions by that point. I didn't go all in. I just became curious about what was available and what things would look like, you know, my shopping trolley, and started chucking in just the odd item. I didn't necessarily cut gluten out as such. But I just started adding in items that didn't have gluten in it, just as an example and just to really highlight how I, you know, it was actually July, August, September. It was actually about three months following that process before I then made the decision where I'd done some more research. And I did find out that the number one thing to cut out was gluten and sugar to reduce inflammation in your body. So it took me about three months to actually take that full step and reduce the gluten in my, you know, in my diet and in my shopping trolley. And I found with that, you know, easing myself into it gently and really, really going at a snail's pace. You know, it's create, to me, it's created longer lasting change. You know, it's made it more sustainable and more practical and easier to practice in day to day life, if that makes sense.

Rachel:

Absolutely. You became bed bound, you're starting to take these baby steps, and then at some point you decide you, you can't live in this expensive apartment in the middle of the city or you don't want to tell me about that.

Amber:

Yeah, kind of. I made it through the first, like, year and a half. I don't know how, but I did. And things were actually looking a lot better, not just health wise, but, like, financially with my work. Like, I was just starting to get somewhere because my health has always been my priority and then work and then the pandemic came along and swiped away my income for a second time. So that was when I really had to sit with, okay, what is it that I really want? What do I want to do? Where do I want to be? And I had kind of started wanting to venture back home to Yorkshire to be nearer friends and family. And, yeah, I pretty much decided that I was going to sell my apartment and live mortgage free, and that's what I did. 

But again, a slower process because I sold my apartment, I moved into a rented room in someone else's house just to give me that breathing space. And thank goodness I did, because I had a massive relapse in the middle of all that. And of course, we had everything going on globally, so, you know, the uncertainty was, you know, that's all there really was at that time. So creating that space for myself and having a bit of an in between stopgap until I kind of, like, figured things out really helped.

Rachel:

Yeah, I'm definitely hearing that theme come up over and over with the slow change, the one step at a time change, and not the full overhaul, which is extremely counterculture, as you've mentioned, radical, I think, is the words you used. Even having kind of sat in these themes for a while now and talked to a lot of people, I still find myself wanting to overhaul this or overhaul that. And to your point, it rarely takes. The things that take are the, the slower and more incremental changes, which is just really hard to square with the way we do basically everything else. Right, where you take an action and you hustle and then, and then you get the result and then you go hustle on the, on the next thing. And so, yeah, when, when you say something like it was a year, year and a half, four years, et cetera, to me, that sounds like, yeah, that makes sense. But I think to, to a previous me, might have sounded like, what? Four years?

Amber:

It's a hard lesson to learn. It's a painful one, isn't it? But it's one that I've had to learn myself. And when I shared on my socials, I don't know if it was like two years ago now, that slowing down was actually up there with one of the greatest challenges of my journey. I felt physically, I was physically, I felt physically sick sharing that with my audience. I had no idea at that time that that was really common and an actual, you know, a genuine struggle amongst many of us.

Rachel:

You know, I still feel a lot of shame talking about how much sleep I need or, and, you know, I'm in a very comparatively able place, and I write about it all the time publicly, and I talk about it all the time, and I still feel that kind of just immediate kind of spark of shame talking about it. Even still, that may never go away for me because it's so deeply ingrained in my worldview based on the culture that I've lived in. 

One topic, I'm really interested to hear your take on. You use the word “warrior” in your Substack, and you talk a lot about personal agency. You took agency and it made all the difference, I can tell. And for you, me, you know, I certainly have taken agency and made changes that really made an impact in some ways, and then in other ways, not so much. And I think I've really struggled with this idea of personal agency because if I go into something believing I can control the outcome and turns out I can't control everything and it doesn't work, I can really end up beating myself up if I'm trying to do things and they're not having the effect that I want. So I'm curious how you think about that tension again.

Amber:

I'm only just starting to kind of piece, piece, you know, put the pieces of the jigsaw puzzle together, if you like. But I think from early on, I can really see that I had a big focus on creation and not control, which is something that I see is. I can't think of how to describe it, but it's. It's something that's been starting to stand out to me more and more and more. And I think, yeah, I think I have looked at it from an angle of creation and not control, and that has helped and made a big difference. And also around drowning out the noise of everyone around me and tuning into my own inner knowing has really helped tremendously. That's helped a lot with all the conflicting information out there because, you know, you could read one thing about diet, and there's 500 other things for and against. So, yeah, that's definitely helped me, is looking at it from an element of creation and not control and tuning into my, deeply tuning into my own kind of inner knowing and inner wisdom. And what my body's trying to tell me, you know, like, what is my body trying to tell me? What, when I ask my body what it needs, what does it respond with? How can I respond to that rather than what everyone else is saying or what I think I should be doing?

Rachel:

Yeah. Yeah. That's a skill that not many of us have really practiced much. This phrase, creation, not control, is interesting. I'm curious if you can give me kind of a concrete example of a challenge and then how it might be approached from a control perspective and how you would approach it from more of a creation perspective.

Amber:

So back in 2018, when it really felt like one day, and like I say, it was very, very, very uncomfortable, I actually physically remember the day being sat in my apartment on my sofa, and I really sat with, you know, if I've kind of, you know, I found myself in a situation with no mortgage insurance, no sick pay, and an illness that I'd known that I'd had for 20 years that I didn't do anything about purely because I couldn't get anyone outside of myself to listen to me or validate my own experience. So I kind of sat with the deeply uncomfortable prospect of an insight of, like, if I've created this situation, which was very uncomfortable to sit with, I have to say, then surely I can create my way out of it. And that was the empowering bit for me. 

The discomfort was horrible. You know, that was really, really tough to sit with that. But the prospect of being able to create my way out of it, gave me hope, gave me light, gave me something to work with, something to work towards. And I know in the medical field, we talk a lot about managing our illness, controlling our illness, the fact that it is considered incurable and that there is no cure. Again, I feel like I've approached it from the creation side of things like the creating health and wellness. But even when I did that, I had no idea where this journey was going to take me. I had no idea what was possible. I definitely didn't see myself living the life that I live now with the energy that I have now and, you know, the wellness and the vibrancy that I enjoy today. But I still, yeah, I still set off on that journey anyway, like, with a big bag of hope and, you know, just the prospect of some wellness, any wellness, anything, I'll do, you know, anything was preferable to where I was at that time, no matter how, you know, no matter how incremental or small the improvement was.

Rachel:

Yeah, this notion of, you know, I created this situation is definitely intense. I've done a lot of thinking about this because I had a similarly big and fast career before. And, yeah, I've grappled a lot with questions of regret. Do I regret doing that? Depending on the day. Right. It's a different answer for me, and it sounds like for you, it's been a journey of naming that you, you feel like you did cause it and, and then, but that also, you have some agency to come out of it. Is that a, is that a good way to summarize what you're saying?

Amber:

It's a tough one, isn't it? Because the, you know, like, we live in a blame culture, and a lot of us feel responsible for our illness, but in a way that we're blaming ourselves from it. And I've had to work with that in other ways, you know, blaming myself for not doing this or that or enough of this or I should have done that or more of that. I have kind of beat myself up internally in that way. But when it comes to the illness, how can I describe it? Because I feel it was more about taking radical ownership for my life, for my health, for my body, rather, and creation, you know, taking back the reins of creation for it, rather than saying, this is my fault, it's my problem, you know, I've done this to myself. To me, there is a clear, you know, there is quite a difference.

Rachel:

Yeah. It's certainly a different vibe, if nothing else. Yeah. I mean, I also, after doing my own set of reading and learning. I really liked the idea that, sure, we can make decisions, but we're also making decisions within a context. And that context can really make it difficult to make certain types of decisions that might help our health, and it can make it very easy to make decisions that can hurt our health. And that resonates with me because it kind of balances yes, I did make those decisions. I do take ownership of that. And, you know, the world around me didn't make it particularly easy to, to make a different decision. And. And so that's true, too. And. And I kind of like that balance.

Amber:

Yeah, absolutely. Yeah. And I love that word balance as well. A balanced approach and a balanced way of looking at things, because, you know, a big part of the illness was living with migraine hangover. I drank for 20 years. You know, every single weekend, I would spend, spend every Saturday or Sunday in bed with very severe pain, puking six to twelve times every single weekend for 20 years. And if I had my life over, of course I'd do things differently. I wouldn't make those same choices. But I can also appreciate that that's the life I lived. I chose to live that life. And in many respects, that's the kind of path we're guided along as well. The work hard, play hard, the success, the career, the home, the job, you know, the car, the money. So I can also have compassion for myself at the same time.

Rachel:

Yeah. Yeah. In terms of migraine, you know, I don't focus these conversations on learning how, you know, tips and tricks and ten best ways to, you know, blah, blah, blah, because I think that's kind of the problem with the Internet coverage of these, these things. And I'm so glad there are more writers like you and like many of the other folks that I've talked to who are covering it in a different way. But that said, for listeners who do have migraines, it is also often very helpful and nice to hear some of the learnings that are very hard won through your journey. So I'm curious if there's anything that you learned about migraine as a disease or that you did to get through these episodes that really rises to the top as kind of like one of the big ones for you.

Amber:

Yeah, I'm gonna have to say, learning to let the body lead the way.

Rachel:

Yeah. And what does that look like? Kind of like on a Tuesday. Right. So you're gonna have lunch. What is your body leading the way look like in that moment?

Amber:

So checking in with your body. So checking how it feels to be in your body and asking yourself the question, you know, like, “How does it feel to be in my body today? What can I do to support how I feel?” Because that might mean going out for lunch with a friend and having that catch up and that connection and feeling invigorated afterwards. But the next day, that might mean, like, actually, do you know what? My body needs rest today. Like, today is going to be a bed day or a PJ day. So, yeah, that is one of the ways my body, speaking from personal experience, kind of back at that time in that place, my body was screaming at me. That stress was killing me. You know, I had felt in my life like it was caving in at all angles. Like I'd, you know, had an unwanted, unexpected breakup with a partner. My dad announced he had an aggressive form of cancer. I moved to a new place where I didn't know anybody. Work problems ensued. I was heartbroken. I was depressed. You know, the migraine attacks took off on a whole other level to an extent that I could no longer conceal them or keep them to myself on a weekend, for example. And, yeah, that whole time, you know, like, I knew that my body, I needed change, needed to happen, and I knew that stress was killing me, but I kept ignoring it. I kept drowning out the noise of what my body was trying to tell me and continuing on as I was. 

There is a second, though, with the migraine, because this has been mentioned a couple for the last two years with The World Migraine Summit, that change is difficult. You know, change is difficult to make, and particularly if we're working and we've got our family and other responsibilities. For my part, I do see what happened to me as a gift now because it freed up and opened up that space for me to research, for me to connect with my body, for me to make the changes. But I appreciate not everyone's in that position. And yeah, what's been mentioned at the Migraine World Summit the last couple of years is that even through research alone, so even through research of your lived disease or condition alone, without making any changes, you can expect to see a reduction of 50% in terms of, like, attacks. And there are a lot of people who are, like, testifying to that as well now. So, you know, even research is a standalone thing. 

A lot of what I've learned from The Migraine World Summit really helped me understand, you know, like, what I was living with, I had no idea. So when they were talking about, say again, just one example of the four different stages of attack, I wouldn't realize that for one, you know, an entire 24 hours to 48 hours before the pain was triggered, that I was already in attack. So just understanding that, for me, was that, you know, things like that was an absolute game changer. Understanding symptoms and severity in a way that I could then communicate to others so that they, you know, they could at least hear me or at least grasp what I was trying to say was a game changer. I mean, that changed everything for me that year where I learned to be able to do that. And that in itself was deeply healing without even necessarily making any of a change. It's just actually being able to speak up for myself and say, you know, this is what I live with, and this is what's part of it.

Rachel:

Having the language to state what you're feeling in a way that actually feels like it represents what you're feeling is in itself an achievement because of how indescribable these experiences are. I've heard a number of times throughout the conversation, and it sounds like you've had this experience where, looking back, you realize how bad it was, and maybe in the moment, you didn't even realize. So even in the moment, you couldn't even kind of tell yourself how bad it was, let alone communicate to someone else. And I think that's really common, especially when there's fatigue involved. Man, it is hard to describe what fatigue is in a culture that, you know, loves being tired. Everyone's always tired. And, yeah, fatigue is very, very difficult to talk about. You've read a lot, obviously, and a lot of it has been scientific research. Sounds like you've done this event, The Migraine World Summit, for a few years. I'm curious if there's any authors or writers, whether they're more informative or more literary, that really stand out to you, either your approach to migraine or how you see yourself as a chronically ill person.

Amber:

Amy Corfeli, although it's not migraine disease specifically, and she lives with endometriosis, I've recently read her book, Finding Peace with a Devastating Disease I believe is her book. That was an absolutely brilliant read. How that woman wrote that book from such a profound place of peace all the way through her journey, because much of it was undiagnosed. So she was, you know, kind of living as debilitated by a health condition as she was without actually even knowing what it was. So she hadn't even received the privilege of a diagnosis while she wrote the majority of that book. So. And I haven't listened to her podcast yet. I've only just read the book, but I know she has runs a really successful podcast as well. So, yeah, I would recommend, I would recommend her book and her podcast for not just people living with Endo, but also chronic illness.

Rachel:

That's a good one. I'll check it out. One of the interesting parts about these illnesses is just they really shift our perspective of what's possible in our lives. It sounds like, in your case, initially, really narrowing that lens, and then actually it sounds like   expanding it in a different direction. Basically, given all these experiences, how do you think about the future?

Amber:

Yeah, that's a great question. How I think about the future is very, very different. You know, kind of this year and last year versus the first four years. So the first four years, I mean, my only goal was wellness. I had no idea, like, what was possible. I just believed in something and was given a lot. You know, I felt a lot of hope hurt by that. So I went for it. And then two years ago, I set myself the vision. The more I kind of researched and the more I read and the more I understood and the more cycles I broke, you know, like the chronic pain cycle, the chronic fatigue cycle, but, you know, the drinking cycle and all the different addictions that I didn't kind of realize I was living with them, but I went on to break those as well. Kind of cemented a new belief that I, well, about a year into my journey, I did realize that I was like, all right, I'm on a healing journey here, and I can heal myself. 

So the more into my journey I got, kind of the weller I became, the more, you know, I've probably read over 100 books, you know, continue reading and researching and will probably be a lifelong learner in that respect. The more I can believe in myself, the more I believe I can heal myself further. So two years ago, my vision became full health and vibrant energy, and that's the vision that I'm working for. And on a personal level, on a community level, I really felt like at the time, back in 2018, finding myself disabled by the illness, I really felt cast aside by society, as if kind of slung on to a scrap heap with all the other chronic illness warriors. Join hands with one another and really support one another and lift one another up. I believe that's possible.

Rachel:

Me too. And that's why we're here. And I'm really glad to have you because my previous work was so cutthroat. I was very used to a world where basically there's a winner and a loser in any kind of transaction or any kind of, really, engagement. And what I love about this community is the more we all talk to each other and write and interview each other and collaborate, you know, the better off we all are. And so it's just been a pleasure to talk to you today. Is there anything else you'd want to add that you want to make sure our listeners hear?

Amber:

I mean, I'd love if any listeners either kind of want to reach out or connect with me or contact me, then, you know, be. Yeah, I'd love that.

Rachel:

Great. And what's the best way to do that?

Amber:

My Substack page, The Warrior Within. I've got my, like, the email DM set up on there. Yeah, that's the main page I'm on. I'm also on LinkedIn and Instagram just under my full name, Amber Horrox.

Rachel:

Great. And we'll also put those in the notes. I will definitely be thinking about Amber's phrase “creation, not control”. I think for me, moving away from control doesn't come easily. I'm a chronic to-do list maker and someone who likes setting a plan and checking it off, which has made it hard to have a chronic illness. And I think this is a pretty common experience for people like me. But maybe replacing it with the word creation can help because it still allows for action. But it suggests that instead of being quick and clear, the process might be iterative and unexpected and maybe even beautiful. You can find more on my substack Inner Workings at raekatz.substack.com. That's raekatz.substack.substack.com. Amber's newsletter and additional recommended resources are also linked in the show notes. Thanks, and we'll see you next time.

Amber’s Resource List

On Migraines

• The Migraine Miracle—a game changer when adopting an anti-inflammatory way of eating

• The Migraine World Summit—an annual event I’ve tuned into for the 7^th time this year.

• Amber’s summary of Migraine World Summit material

Trauma Healing / The Nervous System

• About Trauma Healing Accelerated—program with Dr. Aimie Apigian, MD MS MPH

• MindBody Breakthrough—I did a Healing Trauma workshop through these in the UK

• Addiction Expert, Speaker and Best-selling Author Dr. Gabor Maté

Memoir

• A Memoir of Migraine Survival by Danielle Newport Fancher

• My Migraine Breakthrough by Lee Canter

• Uncovering Bliss by Emily Englert

• I Have Fibromyalgia but Fibromyalgia Doesn’t Have Me by Chantal K. Hoey-Sanders

• Finding Peace with a Devastating Disease by Amy Corfeli 

• In Sixteen Years of Endometriosis podcast 

Mind/Body/Soul, Whole Body Healing

• You Can Heal Your Life by Louise Hay

• Balance Your Hormones Balance Your Life by Dr. Claudia Welch

• Fierce medicine by Ana Forrest

• The Universe Has Your Back by Gabby Bernstein

• The Biology of Belief by Bruce Lipton

• The Holistic Psychologist

Amber’s Links

• Warrior Within Newsletter

• Hit and miss podcast

• Healing through writing space (we meet every Monday behind the paywall)

Welcome (back) to the Lady’s Illness Library! This is a space where we explore various winding journeys with chronic illness, and particularly those that are riddled with mysterious symptoms, are difficult to diagnose, strike in the prime of life and affect mostly women. You will not find “TEN TIPS ON HOW TO GET BETTER” here, just honest conversations with insightful women.

This week we are trying something new—an audio interview! I have found that hearing the voices of the women I speak to has been powerful for me, and I wanted to give you the opportunity to hear it directly from them as well. You can listen to the lightly edited interview, or you can read the transcript below if you prefer to stick with text. For those of you who have been around here a bit, I’m curious to hear what you think of the new format.

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is the extraordinarily thoughtful writer behind . She has spent over a decade with varying symptoms, from upper GI issues (feeling like food was getting stuck when she swallowed) to chronic gut problems to Lyme disease and adverse reaction to antibiotics and panic attacks and more. She told me a frustrating story about trying to get doctors to take her seriously, followed by a beautiful story about finding a care team that works for her, (wahoo! It’s actually possible!). Ema talks eloquently about body awareness and cyclical living, and how she has slowly shaped a new life around those concepts. There is a lot of hope in this conversation, and I am thrilled to share it with you.

A couple of resources from Ema are included at the bottom of the interview!

Key Takeaways

• Finding a doctor who is a collaborator can be transformative. Ema brings information about her body and her experience to her doctor, and her doctor brings medical training, and then they both work together with the full set of information to come up with a plan.

• Body awareness can be woven throughout life. It is not so much a new habit or something you do five minutes a day, but an ongoing ability to notice what’s happening in your body. Through embracing ongoing awareness, Ema realized that for many years she was taking only short, shallow breaths, and deep breathing caused her to panic because her body wasn’t used to it.

• Cyclical living means, in part, accepting that the weather will shift and you don’t control it. This includes external weather—the seasons—as well as internal weather—moods and hormones and energy levels.

Listen to Our Conversation

Transcript

SPEAKER 1: Rae Katz

In your own words, what is your illness?

SPEAKER 2: Ema Hegberg

What is my illness? It makes it sound like it's singular. And it's, it's not.

For much of my experience of it, I haven't had a name for it. It's just been a mysterious constellation of symptoms that I was constantly playing whack-a-mole to try to stop or change, and I think when it comes down to it, I think at the core of it is my microbiome is all messed up.

Microbiome dysbiosis is the diagnosis that I was given.

I think that's down at the root of the problem as far as I can tell at this point, and then that has a bunch of other sort of issues that come out of it. But it's been 12 years of some kind of illness, shifting, changing. Seven of those, I didn't have any sort of name or diagnosis or any sort of confidence that I had anything, just I had these symptoms and they were incredibly intrusive. And doctors didn't seem to be able to figure it out.

And then when I started getting concrete diagnosis, diagnoses, it was first Lyme disease, then post treatment Lyme syndrome, and then finally microbiome dysbiosis, pancreatic maldigestion, and candida infection.

And that was sort of the most concrete thing that I've gotten.

SPEAKER 1: Rae Katz

And did you have any guides during that time or was it truly just you and you trying to figure it out?

SPEAKER 2: Ema Hegberg

Yeah, to begin with, it was it was me and I was going, I mean, I was basically a kid and I was going to doctors, right? And I was like, Hey, fix me. Like, this is what you're supposed to do, right? Just please fix me, I know something's wrong.

And that didn't work.

And so then it was yeah, what can I figure out on my own? Then I started dating this boy, and he was really good at research and he cared. And so then it was he and I, and now we're married. And him, it was just, you know, then it was sort of us and just sort of our scrappiness of being like, no, we know something's wrong.

We can figure something out.

We can research.

We can read this.

We can read that.

And so he's been absolutely... I tell him, like, I don't know where I would be if not for him just rolling with it and being like, we're going to figure this out.

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SPEAKER 1: Rae Katz

Can you talk a little bit about those intervening seven years and what kinds of symptoms you were seeing and how they ebbed and flowed?

SPEAKER 2: Ema Hegberg

It started cropping up when I was about 19, so this has been the entirety of my adult life so far has been experiencing illness. It started with upper GI problems. Just I'd eat and it would be like the food would get stuck is how it would feel. So it became very difficult to eat freely and comfortably. Too many trips to the bathroom was part of those early symptoms. And fatigue.

I was 19, 20, 21 years old and I was like, I shouldn't be this tired.

I went through a whole bunch of testing at the beginning because I had the great privilege of my dad being a public school teacher and we had good healthcare.

So I was able to just go in there, give me all the tests, do this thing, that thing, all the blood work, eat radioactive eggs so they can see how things move through my GI system.

[Sarcastically] It was a fun time.

And everything came back normal.

It's normal.

It's normal.

It's normal.

And that would be presented as a good thing.

And I was like, no, no, I know there's something wrong.

I don't want normal results. And sort of came to the end of the rope, like the end of the line, like there's no more tests. That sort of just began hobbling through, like trying to figure out on my own.

Well, if I eat this, it makes it a little better.

If I don't eat this, that makes it a little better.

Yeah, hobbling through. That's what a lot of it was. And then we get a little better. And then, oh, and then something else would pop up for seven years. So it was that seven years of just sort of getting through. And then I got to a point where I could not get through anymore.

SPEAKER 1: Rae Katz

Yeah, on the on the verge of being 27.

SPEAKER 2: Ema Hegberg

I had been through doctors and doctors and doctors and doctors and then I was in a new doctor's office feeling like my heart was racing and I couldn't breathe.

For some reason that doctor very offhandedly ordered a Lyme test.

I think I sort of had just sort of thrown something out about I was in New England recently and for some reason she decided to order one and she was not a great help but that sort of pushed it to the next step of like there is something.

So I was diagnosed with Lyme disease. I started treatment for Lyme disease, which is antibiotics, antibiotics, doxycycline. That was the treatment. I would never discourage anyone from doing it because I think it's important to do antibiotics for Lyme disease, but it made me much sicker than I had been before.

Within 45 minutes of taking the first antibiotic, I had what's called a Herxing reaction. Basically, your body freaks out that you're killing pathogens inside of it, which is like, makes sense, kind of a reasonable response, but it felt like an exorcism is sort of the best way to put it.

I had to keep my organs functioning consciously, that's what it felt like. (It's not what was happening.) I had to consciously keep my heart beating, consciously keep my lungs inflating, which is terrifying. And that's what happened every single time I took the antibiotic for a couple of weeks.

That pushed me into an even deeper state of ill health. I had to quit my job and basically existed on the couch.

After that went into a sort of let's try alternative things because the Western medical model had seemed to fail me miserably. So that seemed the logical next step. Surely that will be a group of people who would get it.

And it turns out not.

I encountered the same issues that I found in an allopathic system in functional medicine and a couple of things helped, other things hurt.

I got an email today from a doula that I follow and she called the allopathic western medical system a desensitized system and I think that's a good way to put it.

In that system, I didn't feel like I was seen as a full human. And allopathic means the Western medical system, Western medical system, alternative, traditional ways of healing being the opposite of that. But yeah, within that model, I didn't feel like I was like I was seen as a human. I felt like I was seen as a machine. And I wasn't seen as much else, you know.

I wasn't really seen, I wasn't really cared for.

I was just a number.

I was just a thing to get through.

And I encountered that too in functional medicine. Again, with people who didn't really see me and didn't really say, here's a worthy human being to be cared for.

And it's not that it was all bad. It was just that, once again, I found I was having a hard time getting the care I needed when people weren't able to sort of dig deep and accept the complexities for what they were, because it was a very complex sort of situation.

I went through a couple of functional medicine practitioners and still not, you know, some things were better. With the one functional medicine practitioner, I was able to address the post-treatment Lyme syndrome and really get on a good way there.

But I sort of again left those practitioner, that practitioner, and I was just like, well, I guess I just do it on my own again, on my own with my husband.

But still, it's kind of like, you know, we can't order a blood test, we don't have years of training, then sort of had another crisis snap landed in the ER with what was ultimately a panic attack.

And after that, got in contact with a completely normal allopathic Western medical trained doctor, physician's assistant, I think is actually what she is, who had all of the normal standard training.

But she was in this much different model and situation, which was that the company that my husband works for, which is a national snack food company, has a basically socialized system of medicine for their workers and their families.

So there's a clinic that we can just go to and it's free and just be seen as sort of our general practitioner there.

I don't know all the ins and outs. I don't know how insurance is still involved somehow, all of that. But it was very different in that it's a smaller, it's a smaller group of people that is going through those doors. And their insurance situation is different somehow.

So I saw that practitioner, and that was really when it started to change.

And in our first conversation, she has this delightful West Virginian accent that I won't attempt to replicate. But she was like, I think we're playing whack-a-mole here. How about we stop doing that?

And I was like, yes, let's stop doing that.

SPEAKER 1: Rae Katz

That must have been an amazing thing to hear.

SPEAKER 2: Ema Hegberg

I was actually a little bit annoyed at her at the time.

SPEAKER 1: Rae Katz

Tell me why.

SPEAKER 2: Ema Hegberg

I was like, I don't know the way she said it.

I was like, are you annoyed at me?

She wasn't. I understand that now. But I was like, yes, the truth of the situation was that I was playing whack-a-mole and I was trying so hard and had been for so long to present my case, as it were, very coherently, very clear. I've laid it all out for you. I've done the work, sort of, here's my report. Can you please take, with your doctor eyes, look at it and see what's wrong.

And she was just like, no, honey, this is a mess.

And I was like, yeah, yeah, it is a mess.

It's been really interesting because I thought for so long that I could go to a practitioner and they would Fix Me, Solve It, Save Me.

And Angie, my current practitioner, she is my collaborator. She's never tried to be anything else. She very quickly understood I've been working on this for a long time.

I have done a lot of reading.I have opinions and I have an awareness of my body. And she's not going to infringe on that, but she has a skill set that I don't have. And we work together on that.

And she then got me in to see a specialist, a GI doctor, a gastroenterologist, got some tests, got some diagnoses.

And we got some answers.

And then we bounced things back and forth.

How about we try this?

How about we try this?

SPEAKER 1: Rae Katz

It says that you found a practitioner who has two unique things going on.

One is the context in which she's practicing, which you described, and the other is kind of just her outlook, her practice approach, being so comfortable with uncertainty and comfortable with not knowing the answer.

Neither of which are common.

SPEAKER 2: Ema Hegberg

She approaches it with so little ego.

And I think that's what I've run into with a number of doctors and functional medicine practitioners.

And she's just really like, here, you know, here's what I can offer you, and here are the limits of my knowledge, and I care. We have a very, I don't know if she has it with other patients, but we have a very, like, she's my older sister dynamic.

And she's just like, I just want you taken care of. I want you to be okay.

And that's changed how I view things for myself in this process.

To have a practitioner who's like, you deserve to be okay.

SPEAKER 1: Rae Katz

How has that changed your view, your outlook on it?

SPEAKER 2: Ema Hegberg

It's made me believe it.

I think intellectually, whatever, I believed it.

But to have that reinforced, functionally, like it's just changed. It's really gotten it into my head. Yeah, I do deserve to be okay, as okay as I can possibly be. I do deserve to have a good quality of life, not to just paper over symptoms, not to just make symptoms go away, but to be able to root myself in as good a life as I can.

I really believe it now.

SPEAKER 1: Rae Katz

Yeah, that's really powerful that a doctor could help you on that path, as well as helping you on the path toward reducing physical symptoms and all that.

Very rare.

SPEAKER 2: Ema Hegberg

Yeah. I mean, that took 10 years to get there. And I mean, and it's also not just her.

I think that's one of the brilliant things about how it's gone. I've also got Julie, who is my bodywork therapist. And that sort of was happening concurrently with working with Angie, that's really changed my relationship with my body.

Then I had a talk therapy practitioner, just a normal therapist for quite a while, and that was also happening in the mix of that.

And then my husband.

So it's like there's this team, a team of collaborators who work on my health, and occasionally, there are like contractor people that come in occasionally, and then I don't need them anymore. I'm in charge of it. It's my responsibility.

I have these wonderful people that I get to work with who have helped me so much.

SPEAKER 1: Rae Katz

It's really helpful to hear like an almost ideal image of this, even if it's not necessarily accessible to most people, mostly because I don't think a lot of Angies exist in the world.

But you know, it does make me feel like, okay, it's possible. And that's really cool.

You know, as part of this, obviously, you are taking on a ton of personal responsibility. I mean, you just said, like, it's on you. You're the manager, essentially. And you've written about being the curator and keeper of your own health. It sounds like that's really foundational to your approach.

I'm curious how you balance that with self blame or how you keep out self blame from that equation, because one thing I've heard across the board and have experienced is like, once you take a hefty portion of responsibility for your own health, then it's sort of like, well, if anything's going wrong, it's kind of on you because you're taking responsibility. So I'm curious how you think about that or how that thinking has evolved.

SPEAKER 2: Ema Hegberg

I don't know that I've had a lot of that. I think because of how it progressed from going to the doctor and being like, okay, fix me, please. And them being like, No, you're fine. And I was like, No, I'm not.

And then moving to, okay, I'm pretty sure I'm not fine. I'm pretty sure this is not all in my head.

Although there would be a cycle of maybe, maybe it is in my head, maybe it is my fault. And blame in there, did I do this to myself? Because I had a history of an eating disorder, so I was like, is this just my own fault? Did I just make this happen?

And I had a number of years where I was going into doctor's offices, thinking that I could present well enough that they would pay attention to me. I practiced before I would go in, like I would have notes and I would practice like I was going into a presentation before a doctor's appointment. Like if I just get it right, if I just line it out.

I think there was a point where I was taking in sheets of paper of like a food diary and a symptom and then I realized they hated that.

So I stopped doing that and I started just practicing and make sure I got it all out so that then they could, with all their special training, see the problem.

And then I realized that that didn't work.

I think there was a point in time where I was shifting over from the “doctors can fix me, the doctors can save me,” to “this is my responsibility.”

And I think in that process, more than blame, there was fear. Fear of, okay, this is on me then. What if I can't handle this? What if, what if I don't do it right? What if I don't, you know… all those questions.

And I think there was also a lot of anger into that transition.

I can't believe I have to do this by myself. I can't believe.

SPEAKER 1: Rae Katz

Yeah. And it's, you know, it's a big letdown.

Especially if you grow up in kind of a belief system that that's what doctors do: they help you fix your stuff.

And it's like a betrayal that you're dealing with. So the anger makes total sense.

SPEAKER 2: Ema Hegberg

Yeah, yeah. And also to be dealing with it so young, really, you know, I'd have old people say, “Oh, you should be able to, you have tons of energy.”

I was like, no, no, I don't. Yeah, I know I'm 25 years old or whatever it was at the time. But no, I don't.

And so yeah, there I think and that stood in the way of improving for quite a while all that fear and anger, but I think it was part of the process.

SPEAKER 1: Rae Katz

It sounds like a big part of this also has been, you are the one who knows what's going on there.

And you've talked before about body awareness and the importance of that. I'm really curious what that looks like to you on a day-to-day basis.

Can you describe what practices you do or what kinds of thoughts you have that present the body awareness that has helped you through this process of understanding what's going on?

SPEAKER 2: Ema Hegberg

Sure. I think before I did it, I thought it would be like daily practices and good little habits and things that I would sort of do every day and check off and look, there we go.

And it's actually so much more woven into the whole of my day and just how I live my life now.

SPEAKER 1: Rae Katz

Maybe just an example of you're going through your day and you notice something.

What are you noticing?

SPEAKER 2: Ema Hegberg

Yeah, I think I think the contrast, I think the clearest way to show it is the contrast of before I started to dive into body awareness, and start living in my body.

Before all of that, I had no awareness of my breath. And I now understand I was constantly holding my breath. I used to yawn every 15 minutes. And it was my body asking for like a deep, a good deep breath, because I was just sort of taking these very shallow breaths.

And that's just how I was existing. I was just existing on these shallow gulps of air.

And then I started to get into my body, and feel my diaphragm and feel what a full breath felt like and get used to a full breath, which took time.

Um, when I started to do that, I would start to panic when I would take, you know, just as a standard, like deep breathing exercise, I would start to panic while doing the thing that is supposed to help you not panic because I was just not used to it.

And that was just how I existed.

And now I, through the day, take time to take some deep breaths, make sure that I'm breathing well, but it's also just a bit more of my default.

And I can catch myself now: Oh, right. Yep. Not breathing deep enough. Okay. Take a couple seconds to do that and feel that in my body.

Yeah, I think that's a good example of how it's changed.

You're always breathing.

The breath is always there.

And it's integral, obviously.

And so I think that's been as I've, as I've been getting more awareness, it's just as I've been getting more awareness from my body, it's just as subtle as now I breathe deeper.

And that's just huge.

SPEAKER 1: Rae Katz

Totally. That's a great example.

In the last conversation I had, I was talking to someone who has a lot of breathing related conditions and she introduced me to the concept of email apnea, which is when you hold your breath, right when you're checking your email. And I was like, that is such a good term and definitely something I've been doing for like a decade and a half. And of course, after I hear something that I start noticing it.

And also, of course, as you're talking about breathing deep, I'm like sitting here like, you know, like, as you start thinking about it, yeah, it's a matter of make bringing it into consciousness. And then you automatically start wanting to make a certain alteration.

But it sounds like you've, over time, been able to integrate that type of consciousness a little more automatically, because like, I think for most people, it would require like, a really conscious effort.

And then I guess, eventually, it gets a little more subconscious or just part of the fabric of your life.

SPEAKER 2: Ema Hegberg

Yeah, yeah, part of the fabric of my life - that's a good way to put it. And with that is also experiencing the body more fully, sensation in the body, senses themselves.

Before I would have said I existed from here up. [Moves hands from neck to top of head] That was mainly where I existed.

And now I inhabit more fully the whole, the whole deal, the whole organism.

SPEAKER 1: Rae Katz

Right. And you're pointing to your head just now. It's a very familiar state of affairs, I think for Americans generally but also just kind of anyone who was educated in the American school system, or, you know, kind of grew up in this milieu, because that is what we do.

I know for me, at least until all too recently, that sort of like all the body stuff was, in my mind, I wouldn't have said this necessarily, but it was sort of fake, or like, it just doesn't like, super real.

So maybe I have a stomachache. That's not like related to anything.

And then, you know, in retrospect, it's like, well, of course, of course, it's related.

But, you know, I think one step further in all of this is obviously on your Substack, you write a lot about cyclical living.

I find it so interesting because so many people who've gone through this type of chronic illness that's very kind of unclear or mysterious and particularly that hits at a younger age, seem to be drawn to some version of looking toward the seasons, looking at, you know, the shifts in internal weather, looking at the journey as cyclical or spiral as opposed to linear, you know, it's almost like illness kind of pulls you into those types of metaphors and then interests and then lifestyles.

And I'm curious for you, like when you started thinking in that way, and how it has shifted how you live?

I mean, I know that I'm guessing it's a big shift and I know you write about it a lot.

So it's a big question, but you can feel free to highlight aspects of it.

SPEAKER 2: Ema Hegberg

Yeah, I think that's a really beautiful observation.

It's really wonderful to hear that, that there are so many people who are finding guidance in that model through illness, which I've seen, but it's always so nice to hear it again.

I started to have an awareness for cyclical living as an option when I was in the first awfulness after taking an antibiotic for Lyme. I was living on my couch and looking at Instagram all day long for as long as my eyeballs would allow me to because I was good for nothing else. There was not much else I could do.

And I was constantly looking for something that would help me get out of it. I started to consider alternative ways of healing, herbalism, etc. And there is some herbalist who was talking about it… Sarah Corbett from Rowan and Sage is her name.

And she mentioned this. Actually her mentor, Clara Bailey, who's in Australia, had a course and had all kinds of wonderful resources online.

And it was from her that I started to learn about this model of menstruality and viewing the menstrual cycle as having seasons, and I had had some issues with menstrual cycle things and but it wasn't the main thing I was trying to solve by any means. It wasn't giving me that many problems, but there was something just about how Clara spoke about it, the way that she was presenting it, that it was beautiful and in the midst of like trying to survive and find answers it was something that I started to have an interest in and pursue. Not because I was like, this is going to fix it for me, but because it was fascinating and because it brought a richness to things.

It didn't seem like a solution. It was just like, this is some goodness.

SPEAKER 1: Rae Katz

Can you describe for us just what, at a high level, that type of cyclical living looks like?

SPEAKER 2: Ema Hegberg

Yeah, so the cyclical living that really drew me in was viewing the menstrual cycle as having seasons, and you move through it again and again and again through all of your cycling years.

The menstruation being an inner winter, and having all those sort of aspects of winteriness in the Northern Hemisphere. And then pre-ovulation is an inner spring, the ovulation is an inner summer, and then the post-ovulation is an inner fall (I've always loved the season).

So it was a model which I could tangibly understand.

I was like, I get that.

Winter?

Yes.

Fall?

Yes, I get that.

And that gives me a guidebook for the experiences within my body. This was before I even got into, you know, progesterone does this, estrogen does that. This was a very sort of tangible, somatic way that I could think about that and find beauty. Like, I understand the beauty of fall. I understand the beauty of summer. Saying all of that, that you feel about those seasons, you can feel about a season in your body.

That's possible.

It just totally shifted that it's something, the menstrual cycle is a cyclical thing and it can be something that is worth observing and can bring beauty to my life.

And that was a slow process of a couple years and taking Clara Bailey's course to learn the fertility awareness method, which sort of gives you a very concrete way of seeing your own cycle to be able then to plot very specifically.

Here I am in the inner winter, here I am in the inner spring and so forth.

And I started just sort of weaving that in, because it's an easy way to say to know where you are in your cycle, and to be able to communicate that to other people in your life if necessary.

And then it just started to work its way into my life more because the model is so beautiful and so helpful. I know what winter feels like, and I then can understand better ways to support myself in the inner winter.

From there, just my appreciation of the cycles in all of life grew.

And I think to go back to your observation, people finding that viewing things cyclically is very supportive, instead of linear.

I'm surprised that I found comfort in viewing things that way, because as a kid, I just wanted to be a novelist and not so linear.

That's so like beginning, middle, end. And that's it cleaned up tidy.

And yet, for some reason, the cyclical model actually brings me more peace because I don't know, it's what it's what is repeated in nature all the time.

That seems to be going pretty okay when we let it do its own thing. It'll come back around.

It's brought me peace like nothing else, which doesn't mean that it's easy, but I'm very grateful to have landed on it.

SPEAKER 1: Rae Katz

It's almost objectively more representative of actual life than a linear model.

Maybe it’s less disappointing, like you're not expecting to face the challenges and win and then the story ends. That's really incredible to hear how much peace it's brought brought to you.

The idea that there's always going to be a new cycle, in really good times can feel scary, but in really hard times, it's very comforting. And then pulling back to a broader view, you start getting just a bit of perspective that the cycle will go on.

I think that is what connects it with chronic illness, because there are just ups and downs, and usually not a kind of clear ending point or, like, direct kind of path toward winning, which is our preferred cultural narrative.

SPEAKER 2: Ema Hegberg

Yeah, it's not like A Joseph Campbell Story: Chronic Illness.

You don't slay the dragon.

SPEAKER 1: Rae Katz

I'm really curious just to hear, given that you have found this incredible like care team, which you've basically assembled across the the full spectrum of Western and alternative medicine, can you envision a health care system that brings together these approaches in a way that could have helped you faster?

SPEAKER 2: Ema Hegberg

I don't know if I can envision a whole system, that is pretty hard. But I've started to wonder about a smaller model that could have brought that about, and I wonder if it could help do that for other people.

When you say a system, I think of like a nationwide system, and I think part of the problem is that the system is maybe too big at this point, the sort of Western medical system, the healthcare system in the US.

But for me, I've started to envision something that would have worked. Just for my own self, I've started to think about it as a house… this house where people can come and collaborate on their health. There are practitioners who have offices there. There are relationships with other kinds of practitioners who are a little bit more allopathic, more Western. But doing health in collaboration, in community, and with autonomy.

I've been wondering through all of this, am I supposed to work in healing and wellness? Am I supposed to shift to doing that sort of work? What would that even look like?

I think I'm more interested in finding ways to facilitate what I ultimately did for myself.

How can we make it so that other people can get there and do that? Because there are only so many Angies in the world. So how can we do this? We need something different.

We can't just keep going into doctor's offices and being a number and rating our pain on a scale of one to 10 and we got 15 minutes and then we're out of there. We can't keep doing that.

I think what would have helped me is something that is more community-based and smaller and learning more about my body and really understanding how my body works.

You know, when I started this, when I started with sickness in my life, I didn't know where my kidneys were. That's pretty critical, we ought to know where our kidneys are.

Yeah, so more autonomy, more education, more community, more collaboration. I think those things would have made a difference.

I don't quite know how that becomes a system or a model of healing, but I hope it will happen.

SPEAKER 1: Rae Katz

I love the image of a house, whether that's a literal or a metaphor, I think in either.

SPEAKER 2: Ema Hegberg

Yeah. Going to a literal house, I think that would have changed things.

I have this vision of like a big old house where all these practitioners are and people come, and the point is healing and doing it together. I think it being a house rather than a sterile doctor's office. Our bodies are homes, so doing that in a home, in a setting where we gather where we know we gather, I think that would be really, really beautiful and helpful.

SPEAKER 1: Rae Katz

The other thing about that vision is just that, you're describing relationships between people who are healing as well, as well as between the health care professionals, which is, I think, a big missing piece, too.

Is there anything else you want to make sure to add that we didn't cover?

SPEAKER 2: Ema Hegberg

I think the only thing that I would hope that people take away from this is the thing that I didn't have for so long and didn't believe, which is: you are worth healing.

I hope people understand that.

You're not alone and you are worthy of healing.

Because I didn't believe either of those things and I think that stood in the way and made it all hurt for so much longer.

SPEAKER 1: Rae Katz

Yeah, and your story actually resembles mine in some ways. For a long time, your symptoms weren't bad enough to—correct me if I'm wrong—but they weren't bad enough to, you know, send you to the hospital or make it feel like you are definitely definitely sick.

It could have been just modern life, you know, which definitely is obviously preferable to being debilitated or like sick in a way that's much more affecting but it also has its own challenges, right?

Because you don't think it's real or you wonder if it's real or no one else thinks it's real or and so on.

SPEAKER 2: Ema Hegberg

Yeah, I think for so long I was like, can I just pass out? Like, that'd be great. Could I just do something to really show them, right? So they get it. Which is terrible, because things like that are horrible to experience.

But it's a quality of life question. I didn't have a very good quality of life, and it sounds like, for quite a while, you didn't have a very good quality of life.

And you're allowed to have a good quality of life.

And you're allowed to go after that.

And it's not just stress. It's never just stress, no matter what they tell you.

It's never that simple.

Ema’s Recommendations for Further Reading

The Wisdom of Your Body by Hilary McBride

Cycles: The Science of Periods, Why They Matter, and How to Nourish Each Phase by Amy J. Hammer

Meet me in the comments

1. Have you heard of email apnea, or has breathing been part of your healing journey so far?

2. In what ways have you fantasized about finally being seen in your pain?

3. Share your thoughts on cyclical living - is this something you’ve heard of or tried incorporating into your life?

Leave a comment

Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.

*

is a whip-smart straight shooter who was hit with long COVID in 2020 followed by a diagnosis of ME/CFS. Having spent her career advocating for others through her work as a nonprofit executive, she was thrown into the project of advocating for herself as she tried to secure disability benefits. I learned so much about the US disability benefits system from hearing about her journey, and about what it is like to live in fear of having those benefits taken away. We are only using Amy’s first name here so that this interview or her Substack newsletter can’t be used as evidence that she is actually able to work, grounds to remove her benefits. 

Amy writes the newsletter , a refreshing concoction of wellness resources and stories for those interested in COVID, long COVID, ME/CFS, and other conditions…served straight up, with a dash of humor. Straight up with a dash of humor is a great description of this interview as well.

Key themes from this conversation:

• The process of “proving” you are ill enough for disability benefits is totally demoralizing. Even as a professional advocate, even with the skills and resources to get all the right tests, even with a supportive employer and a doctor who was on her team, Amy still came away from the process feeling dehumanized. She lives in daily fear that her benefits will be taken away if she makes a misstep.

• Pacing can be extremely difficult to embody, even when you believe it intellectually. Pacing is a therapeutic approach for fatigue-related syndromes where you modulate your activity based on your energy level. While it makes a lot of sense, it can often feel like if you are just doing too little–if you are not working, then at least you should be cleaning.

• With long, multifaceted illnesses, what works for one person works for one person. You can talk to ten long-haulers and find ten different approaches that helped with their particular symptoms.

Rae Katz: Let’s start with the basics: tell us in your own words about your chronic illness.

Amy: I have long COVID with a secondary ME/CFS diagnosis. Then there are a bunch of other diagnoses that followed. I have mast cell activation syndrome. I have POTS, which is Postural Orthostatic Tachycardia Syndrome. I have small fiber neuropathy. I have Epstein Barr Virus reactivation. And so many people with long COVID have this constellation of things. This is actually how I know I had long COVID–I never tested positive because I got the virus in March 2020.

R: That was a scary time to get COVID because, oh gosh, it was totally unknown, right?

A: Yes. So my doctor said, assume you have it, don’t go to the ER unless you can't breathe when you're sitting upright. 

R: I know you had some history of other body things going on before all this happened. Can you talk a little about that?

A: You know, before I got all this, I never would have connected any dots. I have autoimmune thyroid disease, but it was under control. I also had endometriosis. I also had chronic migraine headaches from 2010 to 2018. I had about 20 to 25 headache days a month. 

R: Wow. 

A: Yeah. Really severe ones. And I'm not really sure what the connection is. But when I went to see my infectious disease doctor in person, she asked me two questions. She said, “Do you have a history of migraines?” I said yes. And she said, “Do you have a history of endometriosis?” And I said yes. She didn't really even tell me why she was asking me…I just thought it was strange.

R: That's so interesting.

A: Yeah, she's an infectious disease doctor, but her specialty for the last fifteen or twenty years has been chronic fatigue syndrome.

R: So she's tuned in. 

A: Yeah, exactly. 

R: This seems so common in this chronic illness community–in retrospect, many things seem connected, but then no one will really confirm that for you. Basically it makes you feel crazy.

You are super on top of your exact diagnoses and when you got them, and my sense is that’s because that's been a critical aspect of your horrible journey trying to get disability benefits. You've basically had to become an expert on all your conditions and the disability benefit process. I am curious if you can talk a little bit more about that journey.

A: Absolutely. All my thoughts on this are wrapped up in how the whole process made me feel. I'm really fortunate–I had privilege and access–and even with that I'm totally exhausted by it. It's such a demoralizing process. You are constantly made to feel guilty until proven innocent. 

Lady’s Illness Library is a free resource for those who need it most. A subscription to Inner Workings supports this work and gives you access to additional health stories, research, and resources. Upgrade your subscription now.

It all started with trying to get a diagnosis. I had a longtime primary care doctor but I realized that she only really wanted to be my doctor when I was healthy. As soon as I kept coming back to her saying, “no, something is not right,” she just didn't want to hear it. She didn't refer me to anybody. She just ran the basic blood panel and told me “you're perfectly healthy Amy.”

So I just decided I had to leave her. And then every time I faced anything like that, I just left. As time went on, doctors got more comfortable saying “I'm so sorry for what you're going through, I’ve been reading about it and hearing about it. We just don't know enough yet.” And I was so appreciative. That was such a human response. 

And then it became more a project of symptom management–why don't you go see this or that kind of doctor, you know, visiting all the silos of our health system. Pretty quickly, I found that infectious disease doctor who specializes in chronic fatigue. And this is where it ties into the disability. She knew what tests to run that would start to find things. But I was already applying for disability for the first time around then, and they weren't going to connect the dots for me, and I didn’t have the results they wanted–I didn’t have a positive COVID result. So I was forced to go back to work before I was ready, in 2021. 

When I returned to work after my first leave in 2020, I worked for about a year and a half–full time, part time–I kept doing this dance of: I can do it, I can't do it. I was a nonprofit executive for an agency that works with domestic violence and human trafficking survivors, and I managed 55 staff. I was an administrator, basically in meetings all day long–head hurting meetings–contracts, grants, funding, crises, supervising people, whatever. It was very hard to do that job in any kind of limited capacity, even though my employer was completely supportive. So I went on my second leave, and I applied for disability again. 

I did the initial application and got denied again. Now by this point, it's already May 2022. I had two plus years of test results–I had seen a functional medicine doctor in between, and he tested my gut, my mitochondria, he ran a bunch of blood work that nobody would have thought to run, and he found a lot of things wrong. Gut dysbiosis, intestinal permeability issues, mitochondrial dysfunction–pretty significant stuff. I had also had an MRI that showed a brain lesion that was new since COVID. I had more test results than most long haulers would have had going into a disability application. And yet I was still denied. The siloed nature of medicine doesn't help because I had to rely on ten different doctors to send paperwork to support my claim, and a lot of them don't want to do it. 

So I had this whole constellation of things: I’m suddenly prediabetic, high cholesterol, my thyroid is going nuts. My endocrinologist cannot pin it down. I'm having metabolic changes, which is in the literature on long COVID. And now you have millions of people with long COVID all applying for the same disability insurance, all with these similar bizarre symptoms that could correlate but might not correlate. I felt like I was screaming into the void to this insurer: you don't understand, up to age 44 I was exercising six to seven days a week, I was a competitive volleyball player. I was a major hiker. I worked a pretty big job. I had a really full life. I'm a pescatarian, I was never diabetic, my cholesterol was never high, none of this, ever.

R: Right, in the context of your life, something was obviously very off. But to an insurer, being prediabetic, for example, didn’t prove anything.

A: Right. So what my infectious disease doctor said was, unfortunately, I think the only thing that's going to work for you is the two day cardiopulmonary exercise test. And the reason it has to be two days is because, for people with long COVID and ME/CFS, we can do the activity–I could decide I'm going to walk three miles today. Today's not the problem. It's what happens tomorrow and every day after, it's the payback. So the two day exercise test shows that you score normally the first day. Then day two, when they measure all the same things, like your oxygen and all this stuff, everything just tanks. 

There's a unit of energy called MET. I don't remember exactly what it stands for. But, if sitting up and reading a book required 2.1 METs, I was only creating 1.6. So in the report that they wrote up after that test, they wrote that “this means she's unable to even have a sedentary job.”

R: This was one thing that really made my blood boil when I read it in your description of your pursuit of benefits. It said something like, “we don't find any evidence that you can't do this sedentary job.” It really highlights, as you pointed out in your writing, the emphasis on physical disability, and completely discounts cognitive impairment and fatigue. It also just sounds insulting.

A: Absolutely. The other thing that the insurers are not paying attention to is that when you have dysautonomia, your nervous system is not functioning normally. So, all of a sudden it doesn't take a tiger to set you off anymore. It takes a door slamming and my whole nervous system is dysregulated. Any stimulus of any kind causes adrenaline and cortisone to start rushing through my veins, even when there's no real danger, all day long. I would be in my first meeting of the day, and it might not even be all that stressful, but if it was a little stressful, I'm on the couch for an hour and a half. Nobody's gonna hire me to work in 30 minute increments, especially if it's 30 minutes at 9:30 and then I can work another 30 minutes at 1:00. It's just unworkable. 

R: Yeah. 

A: So that two-day test turned the tide for me, and it got them to overturn my appeal. I was also researching how to do this–I watched a webinar that said you have to write these letters like you're an attorney. So I started writing bullet pointed timelines of all my test results. I would put the name of the test in bold. I wrote a four-page appeal that had these test results. So then they approved my short-term disability, and then I had to get approved for long term disability which took a little bit of time.

Since then, it’s just been constant stress. It’s hard to explain how it feels when they call–they're doing their jobs. I understand it. When certain people need the benefit, they push back hard because every person that they approve chips away at their profits. 

But it’s really scary. You read stuff online–like if they suspect that you're really able to work, but you're telling them you're not, they can hire private investigators to surveil you. And this is not a conspiracy theory, or a paranoid wacky thing. One guy, he was approved for long COVID. He needed something for his house and he had to drive to the home improvements store, and they trailed him, and they used that to deny him. 

So I've been so super careful with these folks. I have a calendar that sits by my kitchen table, and I write my symptoms every day. And then there's a note section, and I’ll write exactly where I went: went to CVS, went to the lab. They are not going to pull a gotcha on me. I could pull up the receipt if they need it. But this is how you have to live your life, in this exacting, really demoralizing way, to avoid getting cut off from the benefit.

R: Right. And it's also why we're not using your full name, because you're worried that even writing online or doing interviews online could count against you.

A: That's right. I was in the news a lot before COVID because of my job. So I had a Google alert set for my name, but now I have scrubbed my online presence. Just for this reason–I don't want them to twist things like my Substack. Every week I'm publishing, but it takes me five days to write an essay that takes seven minutes to read. And I write that in my Substack, just in case they ever do find it.

R: This is hard for me to imagine. I know how activating it is for me to experience one single perceived injustice in the medical system, let alone one after another after another for years, where basically you're assumed to be lying and exaggerating. There are obviously realities to consider regarding how insurance works, but I've got to believe there's some middle way, especially with a global crisis going on.

A: Right. It's a game, essentially.

R: You're obviously really good at it.

A: The thing that pisses me off is that my career was to be an advocate for people. So I can do that for myself. But that test I had to get cost me and my husband about four grand, once you count the test and the hotel and food and a cat sitter. We had the money at the time, but I was supervising people that had long COVID and couldn't go for that test. There was no way they could afford to go for that test that’s only offered in three places in the country. How many people are getting denied?

R: It’s tragic to think about.

Shifting gears a bit–you mentioned pacing earlier in our conversation. I was hoping you could talk a little bit about the concept of pacing and the therapy work you did that was related to that.

A: Sure, yeah. Early on when I got that ME/CFS diagnosis, I took a course for people to learn how to manage their ME/CFS, and that's when I first heard the concept of pacing. Logically it made a lot of sense to me: the only way out of this is through, and you have to figure out what you can afford to do.

R: Can you give an example? 

A: Yeah, sure. It takes me a half hour to an hour a day to just get out of bed, and then I have to gauge how much energy I have before I can decide what I’m going to do that day. So for me, at my worst, it was: I can shower today or I can cook lunch. But I can't do both. It's a constant titration of your energy levels versus the activity. If I overdo it, I wind up going backwards in my progress. 

I started seeing my therapist who had ME/CFS, and she had paced her way out of it. It took her about a year. She was really strict about it. She's the kind of person who understood it really quickly and knew in her bones that was how she was going to get out of it. I still had this disconnect between my intellectualization and my heart. It made sense to me that pacing would work, but I couldn’t really believe that I should do that little. I felt like if I’m not working, I should be changing the sheets, wiping down the counter. But you can't make those bargains.

I have a partner of 20 years and no kids. We always had a pretty fair division of labor in our relationship, but he had to take on a lot more. So I was feeling guilt, like, I could at least scoop the litter box. But bending over would send my heart rate racing. So it took me two full years of therapy with her until it started to click. When I look back on it, I couldn't have forced that any quicker. I'm stubborn, I’m overachieving type A–it takes a long time to get messages through and really have them sink in.

R: Especially when it's something that forces you to alter at a very core level who you are.

A: Exactly. So when I was working in therapy, we named my achiever part, his name is Saul. So then what was great is I would be telling my therapist something, and she'd say, “Just a question, did Saul have anything to do with what you did?” And I'm like, yeah. And she’d say, “Saul's not a bad thing. He's gotten you this far in life. But he will keep you from doing what you need to do right now.”

For example, with this illness, flat rest is really important because you have to get blood back to your heart and back to your brain. So I would lay down, and then scroll, text, YouTube. But no, you have to shut the computer that is your brain down, because that's taking energy–20% of your daily calories are used cognitively. 

R: It's interesting, what you're describing is this phenomenon where you just needed to hear it for a certain duration of time and a certain number of ways, from certain people, and then at some point something changed and for you. That really resonates with me. This does imply there's no “right advice,” because everyone's hearing it in different ways at different times in their journey, and it has to come together for each person in their individual way.

A: That's totally right. With long COVID, you can talk to 10 long haulers, and they have 10 different sets  of symptoms going on. 

R: With these illnesses there’s so much uncertainty, and I think that it's really interesting to hear how people balance hope and despair, and also how people plan in that state of uncertainty. So I’m curious how you think about the future.

A: That has shifted for me over time. As I've been reading and watching more recovery stories, I've realized that there's a very big role for your brain to rewire in such a way that makes you hopeful: other people have done this, which means I can do it. It may not happen the same way. It may not happen at all, but just knowing that it's a possibility that I’m seeing people recover, that I can make these attempts at least–that keeps me grasping for hope constantly. 

I keep telling my husband that I know I'm going to work again. I have too much to offer and I have too much I want to do and say, I know I'm going to be gainfully employed again. It may be part time for a long time.

I'll never be that person I was and I'll never have that kind of job again, as much as I loved my career. That job contributed to a lot of unhealthy patterns for me. But I'm really hopeful for the future. I see travel in my future, I see work, whatever work is going to look like. I see being able to live and enjoy myself, and maybe it'll be a changed definition of what I enjoy. 

I'll give you one small example: if I go for a run I crash. But running is not fun to me. So in my mind, I'm like: I don't ever have to run again, even if I'm 100% better. I'm not going to run any more. I’m not going to spend that precious energy doing something I don’t like. There are so many other ways I can get what I need–I don’t need to make myself do something I don't want to do.

Meet me in the comments

1. What’s your go-to way of shutting your brain down?

2. If you struggle with low energy due to chronic illness, have you tried pacing?

3. What have you decided NOT to spend your precious energy doing? What are you saying “no” to lately?

   Leave a comment

Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.

*

is a Substack powerhouse, guiding writers on growing an audience, self-publishing, and generally making a living as a writer through his newsletter . He owns a publishing company, Wannabe Press (with the amazing tagline “weird books for weird people”), where he has written over 40 novels and produced over 1,000 pages of comics. He also co-founded Writer MBA, where he co-created the Author Ecosystems archetyping system to help authors thrive by leaning into their natural tendencies, and co-founded the Future of Publishing Mastermind. 

He has also spent much of his life in various states of chronic illness, mostly with diseases that statistically strike majority women (and I’m thrilled to have our first man represented here at LIL!). This has included an unusual type of migraine, depression, thyroid dysfunction, and most recently, long COVID. Here Russell talks about the long road to self acceptance and some of the various transformations along the way, all with a bit of wry self-deprecation and humor which I found very enjoyable.

You can find additional resources from Russell at the end of the interview.

Key themes from this conversation:

• A toxic element of positivity culture is the idea that there’s always an answer. Lots of times there isn’t an answer, there’s just mystery and guesses. Usually we can’t control the outcome of illnesses–maybe we can manage or shift it, but much of it is out of our control.

• We often have positive and negative attributes that stem from the same place. A bad habit and a superpower can come from the same character trait. A loss and a gain can come from the same experience with chronic illness.

• Moods can affect the physical body and capabilities profoundly, which Russell realized and internalized through interactions with his wife, who reacts to stress completely differently than Russell.

• Russell prevents migraines by wearing red glasses that make him look like “Scott Summers meets Daredevil” 😎

Rae Katz: Starting with the basics. In your own words, what is your illness or set of challenges that you struggle with?

Russell Nohelty: I think it's easiest to break it up chronologically and also by physical and mental. Starting with the physical symptoms: when I was 20, I had a long distance girlfriend. I drove down to see her and we hung out for the weekend, and when I came back home she tells me, by the way, I've been cheating on you, and I have mono. She was 19, I don't hold any ill will–that's how 18, 20 year olds behave, right? Like they are immortal. 

And so I got a pretty bad case of mono. But I just kept going–I would mask up and go to class. And then I'd come home and I'd just quarantine myself. This went on for like six months and I never really recovered from that. 

I ended up meeting my wife soon after, and it was kind of fine for about seven years, and then I got Graves’ disease, which my mother also had. My sister has Hashimotos–everyone in my family has thyroid conditions of some type. I really didn't want to get radiation treatment, so I spent nine years on medications trying to find a balance. Then my medication stopped working two years ago, and I almost died. They needed to irradiate my thyroid and it made my entire body go haywire. 

RK: That is so scary. What was the ongoing experience of living with Grave’s?

RN: I was 28 when I was officially diagnosed, and I would basically be asleep for hours. I would have two hours of energy a day. I was lucky if I could get off the couch for four hours.

RK: Wow. Okay–we'll come back to that. So we're still doing the overview–what else?

RN: I also struggled with migraines when I was a kid, but I had not dealt with them until 2020. I run a publishing company and I had been doing a lot of conventions, and when the world stopped, my body just…I don't know…it all caught up with me. I started having these really severe symptoms–it wasn't even necessarily pain. I didn't know there was a “silent migraine” that could give you all of the problems of a migraine except pain. So I thought I had vertigo and nausea and all of this stuff. It turns out it was a migraine. The reason I wear red glasses whenever I’m at my computer is because I have these crippling silent migraines, and it's caused by blue light. Since I've had these glasses, I haven't had serious episodes.

RK: Can you just describe the glasses?

RN: Sure. Most people know what blue blockers are, but they block only ten to twenty percent of blue light. These red ones that I have make me look like Scott Summers meets Daredevil; they block 95% of blue light. It looks like I'm in the apocalypse, everything is red. But in return, since I've been wearing them, I've gotten almost zero migraines. I brought these to Comic Con and I wore them for five days and I felt great the whole time. That was one of those moments in my life where I was like, “how did I ever live like that?

RK: Wow, what a change. Can you talk a little about the mental health side? I am also interested in how you think about the connection between the two.

RN: So I I didn't know until I got on antidepressant medication that every person doesn't hear a voice in their head all day telling them to kill themselves.

RK: How old were you when those thoughts started?

RN: As old as I can remember–maybe thirteen? Eighteen for sure. I can't remember a time where there wasn't a voice in my head. If something went wrong, it would just be like, “maybe you should kill yourself.” It was just a constant thing. And that would lead me to doom spiral and doom spiraling would lead me to more suicidal thoughts.

Then one day, very soon after I got on meds, I woke up and was…I was fine. Bad things would happen, and I'd be like, whatever, it will probably be fine. I'm forty and I started this medication three years ago, so pretty much for thirty years of my life, anytime one thing went wrong, I would just spiral into oblivion. 

RK: That's a long time to live with those thoughts.

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RN: The day that it changed, I said to my wife, “I have a question for you. Does everyone not have thoughts of suicide constantly all day every day?” And she was just like, “no, people never have that thought.” And it was another moment where I was like, how did I get anything done in my life? I felt like I suddenly started playing the game on easy because the Graves’ wasn't making me so exhausted that I couldn't move, the migraines were not happening, and I stopped having suicidal thoughts. I have long COVID now, but compared to all of the other stuff, it's like a dream. 

RK: Wow, it sounds like you have been through multiple transformations.

RN: Look, I am a het, white, cis, middle class man, and I was every bit the shitbird that you would expect someone who has that designation to be. I wasn’t a bad human, just completely naïve to any other condition. I would hope that I would have gotten there without all of these things. But illnesses like these definitely open your eyes to the fact that people suffer silently all the time, all day, every day. 

Having all of these things happen one after another after another, if nothing else, it gave me perspective. That is a very rosy picture of the whole thing. Don't get me wrong, I'm not happy that any of it happened to me. But when my wife finally got diagnosed with chronic fatigue syndrome, I was like, I know exactly how to handle this. I've already been down this road for twenty years. 

RK: What had you gleaned that you then wanted to pass on?

RN: You get a lot of resentment at first. It's hard to see yourself not doing the things that you used to do, not being able to perform them as well or at all. Like if you love cooking and you have a chronic illness, especially something like chronic fatigue syndrome, you can't really cook because you can't stand for two hours to do it. Or if you do, it really affects you the next day. So since I have long COVID, if I overexert myself then two days later I will feel it. And if I keep doing it day after day after day, it will just compound the terribleness. So you have to learn how to moderate yourself and how to let things go. 

Sometimes my wife has to use a scooter or a wheelchair to sit down at a show–she can't stand up and sing at a concert for four hours. I also can't do that. Being able to make peace with that lack of ability is very hard. I think it took me a decade at least. It's like grieving somebody but the person you've lost is some aspect of yourself, one that you probably used to take for granted.

RK: It’s interesting because this experience of not being able to do the things you used to do–everyone has that experience eventually. Some people just get to have it when they're seventy, if you're really lucky. It's just a question of when it happens.

I know you’ve written about positivity culture–can you tell us some of your thoughts there?

RN: I hate positivity culture. The biggest problem with positivity culture is that they think there's an answer. Do you know how little we know about the human body? We are very good at dealing with about twenty diseases, and there are a billion diseases where the answer is: we're going to try medication with you until you give up or we find one that works. We don't know why it works. I think the toxic part of positivity culture is the idea that you can change the outcome significantly. You might be able to manage the outcome, you might be able to improve the outcome, but almost never can you completely reverse the outcome, and almost never do you even fully understand that it works. 

RK: In one of your pieces of writing you describe that you're trying to be very “beige,” almost in contrast to positivity culture. I'm curious if you could talk more about what that effort looks like on a day to day basis.

RN: I decided some years ago that I would be willing to give up the elated highs–which I don't even think is that great anyway because it makes you numb to everyone around you–if I could cut off the bottom of the lows. I don't want to lash out. 

So I spend a lot of time putting myself in situations where I can win. Like I know I get stressed when I don’t have time to finish something. I need to leave double the time that even the worst estimate says so that I will not be late, because when I am late I lash out. It happened the other day–I left my house 10 minutes late and I hit traffic, and I flipped out. I was by myself, thankfully. It doesn't happen a lot, but I think that it mostly doesn't happen because I do a lot to manage my environment to put me in a position where things can go well. 

I'm privileged, my wife and I make a good income. We don't have any kids. We're able to make sure the stressors don't overwhelm us. But I do think that what I manage is not so much the disease. It's the conditions by which I walk through life. And in doing that, I'm able to end most days with an energy surplus instead of an energy deficit.

RK: So it sounds like your ideas around neutral thinking and beige living includes cutting out the extreme negatives, but also that requires cutting out the extreme positives, too. Can you say more about that?

RN: Yeah, I think of it like a seesaw. The closer I live to the middle of the seesaw, the less I have wild mood swings on the edges of the seesaw. If I let myself have a huge positive, then my body gets amped up, and I get this huge rush of adrenaline, and that swings me back much more easily to the other side. 

It's not that I never take the risk of having huge happiness. It's just, I particularly don't like how I am when I am chasing that emotion. And I feel like, more than most emotions, it can lead to chasing dopamine like a drug.

RK: One thing I'm noticing as you talk, is how you're referring to various hormones and physiological responses resulting from moods, and then connecting these physiological responses with your physical health. That’s interesting because I don't think that's usually how our culture thinks about mood and the effects of moods on physical health. 

I'm wondering how this awareness emerged for you, the awareness that your moods alone–which seem kind of not real to a lot of people–have such a real impact on your actual physical being.

RN: I lash out in stress, but my wife turtles in stress. We’re the exact opposite. I have had to learn that if I raise my voice, even in excitement, it would negatively impact her. She would jump or startle or just run away, and I didn't understand it for a long time.

Then I learned about Enneagram, and that helped me understand how I act in stress and how she does. So the awareness mostly came from recognizing how it affected somebody else. Then, once I was able to tamp down my reactions somewhat, I started to feel physically better, like I could control my body more.

RK: That’s fascinating.

RN: One of the other reasons why I try to find middle ground is because I find it easier to make rational observations about myself. It's much harder in stress or elation. Because I have long COVID, I have to be able to say: “if I do this thing now, then in two days it will be bad.” Minds are not good at projecting into the future like this. 

One of my mantras is “be kind to future Russell.” But in stress…that guy is not good to future Russell. Super happy guy also isn’t kind to future Russell, he’s like “everything's going great! This is amazing. How do I keep this dopamine rush going?” It's only in that center where I can say, “no, this isn’t worth it,” or, “yes, this is worth it.” There definitely are things that are worth screwing over future Russell. Like we went to see Taylor Swift on Monday. Current me hates past me, but that was a good “screw future Russell” decision. 

RK: An interesting extension of this idea is that in some ways everyone is living with these types of decision-consequence patterns, but for people with chronic illness it’s a lot more obvious.

RN: Yeah. My wife got really into personalized medicine and did the glucose tracker, and it's shocking to look at those graphs and see, oh, if I have nuts before an apple, I don't have a glucose spike. But if I have these things in another order you can literally watch the spike. So you can say, oh, these things cause my body stress.

RK: Make total sense. Given that, though, how do you move through the world in a way that doesn't feel like everything is a potential danger? One of the pitfalls I've found is that once you open the door to noticing the things that might cause stress, suddenly you could consider every food combination, you could consider every tiny decision, and that also takes a ton of energy and wears you down. So I'm curious how you balance that.

RN: You just gotta let a lot of stuff go. A lot of stuff will cause you stress, but most things won’t. Like there are probably things you can't eat, but also things you can still eat, like maybe you can’t eat pizza but can still eat ice cream. But yeah, frankly I’d have no idea how to help anyone let go of anything, it’s really hard.

RK: One thing I'm hearing in your story is just…time. I mean, you've been at this for a really long time.

RN: I have been at it for a long time and I've had a lot of time to deal with resentment. Ultimately, you have to learn how to identify with the thing that you are in a positive way, whether that's a mother or a doctor or a person with chronic illness. For example, I've talked to so many people, both who have become successful writers and who have not, and the ones who are happy are the ones who have made peace with the fact that just because you are not that thing that you always wanted to be does not mean you are any less awesome. I can tell you, as someone whose self-worth was tied to my success, because I felt like I was worth nothing for so long, that no amount of success made me feel any better about myself. 

For me, it all came down to being comfortable with the person who exists. I'm way more compassionate than I ever was before, and that's a positive. I'm also way less physical than I was before, and like I don't like that, but I do like other aspects of my personality and who I have become. There are parts of me that I absolutely hate. But there are parts of me that other people and myself love, and a lot of the positives come from the same place as the negatives. Like the lashing out–that comes from the same place drives my desire to help everyone and get people excited. My job is to figure out how to harness the positiveness of it without subjecting people to the negativeness of it.

RK: Given all this, given how long you've been at this, given where you're at, I'm curious how you think about the future.

RN: I have a conference called The Future of Publishing Mastermind, so I have to think about the future a lot. And every year I become more optimistic about what people are willing to hear. People forever were unwilling to hear that there wasn't an answer. But it feels like people are much more likely now to say, oh, there's not really an answer. 

Also, these days, more often I say, “I can't do that,” and people are like, “I get it. I also can't do it.” It used to be that the response was always “I can do it.” And I’m like, really? You've told me you need 20 cups of coffee a day to survive…is that really the world you want for yourself? People are more willing to reckon with that, to say, that’s not normal. Maybe the story that we've been fed that we are immortal and we should do everything, and that we are only as good as the monetary value we create for capitalism–maybe that's not actually true.

Learn more from Russell here!

• Personal website

• Author Ecosystem framework

• Future of Publishing Mastermind conference

And as a gift from Russell, here’s a 30-day free trial of his newsletter,

I’m curious…

1. How do you show kindness to your future self? What does that look like for you?

2. Do you tend to “lash out” or “turtle” when you enter extreme stress? How do you approach that part of yourself?

3. What’s a new thing you’ve learned about the connection between your physical and mental health? I’d love to hear about what new insights you’re having.

Leave a comment

Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.

*

is an inspirational sick person, and not because she pushed through and beat the odds. Rather, she is a clear and deep thinker who has done extensive work to understand herself, her values, and her boundaries after being struck with severe chronic illness at age twenty-eight. Her insights about her own grief process have led her to launch the newsletter earlier this month, where she is exploring the under-discussed topic of chronic illness grief. 

In this conversation, Emily shares her journey, insights about herself, and visions for a future world where the illness grief process is widely acknowledged and deeply supported.

You can find additional resources from Emily at the end of the interview.

Key themes from this conversation:

• Grief is at the center of the chronic illness experience for many people but often goes unnamed. As people lose parts of their life–capabilities, spontaneity, aspects of identity, there is inevitably a grieving process associated with those losses. Calling it “grief” helps provide narrative and understanding, and helps us feel like it’s a normal process.

• Illness, and particularly energy-limiting illnesses, changes your relationship with time, since what you do today impacts your life next week, and you don’t have full control over what your capabilities will be on any given day. This reality often draws people towards cyclical or seasonal ways of living, where we recognize that, while we have some control over our energy patterns, ultimately the external and internal weather of the day are out of our control.

• Groups of chronically ill and disabled people operating together can give us a model for a unique type of emergent organizing. When one person needs to rest, or can’t take on a task because the lights are too bright or any other reason, other people naturally step in with full understanding and without questioning the limitation. What would work look like in this emergent model?

Rae Katz: I know you have a long list of diagnoses, but in your words, what do you have? And when did it start?

Emily Bazalgette: At some point, I might have to check the list of diagnoses I have on my phone, because otherwise I just can't remember them all! The story starts in September 2015, when I was on holiday in Vietnam, and I got bitten by maybe a mosquito, maybe a tick, it's unclear. And I got some kind of unknown virus. I was hospitalized when I was there, and then I came back home and at the time, it really felt like an acute illness story, rather than a chronic illness story. It was like, oh, that was horrible. But I’m home now, I’ve had blood tests at the GP and everything's fine. I took six weeks off work, which felt like a lot. And then I was like, okay, back to reality now. 

Then I spent two years basically denying that I was chronically ill. So if you had known me in that time, you wouldn't know that I had ME/CFS. Exercise is my passion, and I actually upped it—I was doing PT twice a week, lifting weights, all this stuff. I was back at my consulting job working fifty, sixty hour weeks. And then I would sleep for 14 hours on a Friday night, and stumble my way through the weekend, and then go back Monday to Friday hitting it really hard. 

During those two years after the infection, I also started developing wild immune symptoms that no one connected—I was having fungal infections, crazy skin infections, loads of mouth ulcers, just loads of terrifying gynecological stuff. I would go to the GP, I get a cream, you know, a steroid cream or or an antifungal. And then it would be onto the next thing, and it kind of just cycled through that for two years. 

Then in 2017, I started getting sicker and sicker. I quit my job and I went freelance, partly as a way to try to control my hours, and try and get some semblance of rest. I still didn't have any diagnoses. Then in 2018, my plan was that I would take two months off work in January and February. And then I would go back in March and be smashing it again, and life would be back to normal. And then I just completely fell apart in February of 2018. So yeah, I didn't work for ten months.

R: So during your two months of medical leave basically things got much worse?

E: Exactly. I was still trying to do 10,000 steps a day. Rest, but don't rest. So then everything unraveled. And I spent basically 10 months doing a Google PhD in autoimmunity and ME/CFS.

R: Did you ever have a doctor diagnose you or did you figure it all out through Google?

E: I did have a doctor who diagnosed me with a fake version of ME, which I've since found out they do quite a lot, particularly in the UK. He diagnosed me with “post viral fatigue syndrome,” even though I clearly met the criteria for ME at the time. He said, “I’m not going to give you the diagnosis of ME, because if I do, you'll believe you have ME and then you'll never get better.” 

R: That’s wild.

E: Yeah, yeah. 

R: So you’re doing this deep research for ten or eleven months…

E: Yes. I also had a breakdown of a long term relationship in that year, so I was very isolated, I had no energy, I couldn't really see anyone. It was quite an extreme time. I was doing a lot of Googling, and then the first thing that helped was hitting upon autoimmunity and getting my head around that as a concept. I have still never had a correct diagnosis of an autoimmune disease—I was nearly Hashimotos, but not quite, and nearly celiac, but not quite. So, it was all still unclear. But I did take a lot of steps to address autoimmunity, and I do consider myself in remission.

R: Can you say more about that? We're not primarily focused on solutions here, but I do think it's interesting to hear about people who self identify as “in remission.” I am really curious what that process looks like for you.

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E: Yeah, so I had a suspected gynecological condition called lichen sclerosus, which I’ve since found out was an incorrect diagnosis. Lichen sclerosus is an autoimmune condition. Basically your vulva becomes really raw and the skin is really sensitive, and then you get really itchy and it's really, really painful. Obviously painful to have penetrative sex, but also just painful in general. I had all of those types of symptoms developing ever since I got bitten by the whatever. So it was two years, and you can imagine, I mean, I'm not gonna go into it, but trying to get any kind of gynecological condition treated seriously by the medical industry…yeah. So I had all of this bullshit from doctors that you would expect, like, “have a gin and tonic and just have sex with your boyfriend because you're not pleasing him,” and like, “he'll leave you.” So it's just like, wow, okay. That’s a lot of medical trauma. 

Anyway, so I found autoimmunity as a thing through this incorrect lichen sclerosus diagnosis. And then I had all of these other thoughts, like, is it Hashimoto’s? Is it other stuff, right? I discovered functional medicine. This was 2018, and I started with a version of the Paleo diet, the autoimmune protocol, and that I still do to this day, and it has been the major turning point with the autoimmune stuff. Nothing's ever really helped the fatigue, the ME/CFS. But in terms of autoimmunity, the diet really, really helped the gut, skin and gynecological stuff to the point of total remission for four years and counting. I also saw a women's health specialist physio/osteo and had manual therapies. And then I also did a lot of spiritual, emotional, sexological bodywork stuff, as well. When you're dealing with something where there's a lot of trauma, and especially if it's about sexuality—there are a lot of elements to that. So those were some things I did, I wasn't very strategic about it at the time, but I guess looking back, it was quite a holistic approach.

R: It's just incredible how much self-direction that requires. You basically took it on yourself, and that shouldn't be how it is.

E: I just remember coming back from another doctor's appointment and sitting down on this sofa and just thinking, “Oh, wow, no one's coming to save me.” I remember that so well. I was like, “It is on me.” 

R: Yeah, that's a really lonely feeling.

E: It's very lonely.

R: I know that as part of all of this, you've been focusing more professionally on grief. And I'm sure that's informed by your own process. What does that work look like for you right now?

E: It's a very new direction for me. The big dream is to get to a place where there's a super rich ecology of grief offerings and support, whether it's for bereavement, or climate grief, or menopause grief, or chronic illness grief, or whatever it might be. I'm going to start by focusing on the chronic illness side of it. There isn't really anything in the world specifically looking at chronic illness grief—academics don't study it. What we need is a rich ecosystem of ways that people can feel witnessed and validated and supported in their grief, from a position of not fixing. So I think there's a big gap, and I would love to be part of filling it. 

The reason that I came to this desire to work around grief is that it took me five years of being sick, and a lot of loss, to realize that I was grieving. In 2018, I lost my seven-year relationship, I felt like I lost my career, I lost several other close relationships because I just wasn't there. I lost exercise, which was my passion. That all happened to me in a span of about eight months. I lost a lot of functionality, spontaneity—there's just so many losses and they compound and they change and grow over time. 

I knew I had lost things and I was sad and I felt a lot of rawness around that, but no one ever said to me, “this is grief. You've lost things that were important to you and you are grieving them, and that's a really natural process.” My very good psychotherapist didn’t even frame it that way. I think there was someone on Twitter who first introduced me to the idea that grief is not just about bereavement, that you can be chronically ill and grieving. And since then, I’ve just been totally preoccupied by that. It gave me this language, this framework, this sense of meaning and narrative for what I had been through. This understanding that it's natural to grieve a loss, even if it's not a person, but your identity or relationships, for example, has been really transformational for me. 

I have found that as I am starting to metabolize those griefs, I am finding so much joy and liberation and intimacy, all kinds of things through that process. I don't want to speak for other people, but this is what I've experienced, and I know from the reading I’ve done that a lot of people experience that kind of metabolizing and then transformation through grief work. I don’t think grief work is right for every chronically ill person all of the time, but it helped me and I would love to share it.

As a very first step, I launched a newsletter, Griefsick, earlier this month. It’s a place to work out loud, to explore the stuff I'm reading, to have guest contributions from other people that want to work through this too. Later this year I will be training in models of collective grief work that come from Celtic and indigenous practices, where it’s about group witnessing of grief, rather than trying to “fix” anything.

And then to be honest, I need more spoons, and I need more people. I need more energy to facilitate  the group grief work. And I need to do this in collaboration with others  because it's too fragile if I'm holding everything, sometimes I need to take two months off to rest. 

R: It’s kind of shocking once you realize that this is a very real form of grief. It's shocking to look back and think about how that wasn't obvious from the beginning. But culturally, it's just not how we talk about it, to your point. 

I saw in your writing some discussion of shame and grief, and the role of shame in chronic illness, particularly when you write about taking time off work. Can you tell us about this?

E:  Yeah, so age thirty feels like a complete transformation year for me, because I lost all of those things that I've outlined. And those were all markers of identity. Suddenly I couldn't be a “good” daughter. I couldn't be a “good” partner, I couldn't be a “good” friend or a sister. I was ashamed of all of this. I was no longer a super smashing-it-at-work person. I wasn't someone who worked out. I wasn't a weightlifter anymore—all these things.

R: So then who are you?

E: So who are you? Exactly. I spent a lot of time sitting under a tree in my local park, when I was able to go there, with my journal, just being like, who am I? And actually the answer I came to sounds very trite and basic, but it really did feel like a revelation: I am me. There is something core to me that is not about these external things. There's just a core Emily who is worthy and valuable. And that realization has never left me. It has been a huge source of confidence and strength, no one will ever be able to take that away. 

So, weirdly, when I was able to work again, very much part time, I found that my career kind of lifted off after that. Lots of other things in my life really came together, even though I was so much more disabled and able to do so much less, but I now operated from this base level of confidence that wasn't there before. It's not that I don't still feel triggered, or don’t have shame about it all—I still have obviously internalized ableism, like we all do. I’ll probably be working through that forever. But yeah, some things really shifted that year.

R: That's really, that's beautiful. I can see how you'd want to help guide people toward that. It's a hard problem for someone who's been achieving all their life—you can't just one day be like, okay, and now I'm gonna feel my core essence, here are the steps I'm gonna take, here's my plan and my to-do list. That's how I would want to approach it, you know, if I could. But it's a totally different process. That's why I love hearing these stories. 

E: Yeah. And for me, there's also been the role of nature and the seasons, really understanding and immersing myself in the seasonality where I live in Northern Europe, and just understanding that we're not meant to be the same every day. We're actually not meant to be productive every day. Days and weeks are gonna look different because of your internal weather or the weather outside. We're meant to have periods of hibernation and going inward, we're meant to have times of the year when we are outward. Observing how my energy flows with the year, and allowing myself to not be the same every week, that’s kind of essential for chronic illness, right? Because the level of uncertainty and unpredictability is so extreme. But yeah, if you don't find ways to start to befriend it, it can consume you.

R: That's interesting. I have definitely noticed that people with chronic illnesses, and particularly those that are under-studied or not well defined or not believed, do often kind of lean into cyclicality or seasonality. That’s really interesting to me—why do we all feel drawn to that? And I think you've just articulated it really well, which is: it breaks us out of the expectation that we can control the weather of the day, basically.

E: Yeah, that's so well put.

R: I’m curious, just really tactically, how you do that in your life? So you're listening to your internal weather, what does that actually look like for you?

E: On a macro level I follow the Wheel of the Year, which is a modern pagan construct. This splits the year into chunks of six weeks. Every six weeks, there's a festival to mark a particular point in the year. So for example, summer is the time where we're starting to reap what we've sown in spring, and that makes me think about how I have more energy in the summer—I always do, August tends to be the peak of it. And so in August, a pacing expert would say, “you're doing too much”—I’m talking to you, I have projects. I’m saying, yeah, I'll come and see you for the weekend. I do all that with the knowledge that autumn is approaching, and come November, I'm going to be in my flat for like four months. And that's okay. There's just a flow to that. 

And then there’s also paying attention to that internal weather. Each day I say, what is today? How did I sleep? What's going on? If you have ME or other types of fatigue that come with other chronic illnesses, the day is never about the day, it’s about what happened yesterday, two days ago, what you were doing a week ago. Ellen Samuels wrote this great post about “crip time,” which is how chronically ill and disabled people operate totally different to an abled person. For me, I'm making calculations hour to hour: whether to do this or not based on how I am today, but also the knowledge of what I have tomorrow. If I do this thing today, I'll cancel that other thing in two days. This takes confidence and knowledge which has taken so many years to build up. And I would not say that I have mastered it by any means. 

R: Yeah, I think it's a really interesting concept. In some ways, everyone's energy is variable this way, but for people who don't have chronic illness or disability, it can be a lot less evident. The idea doesn’t make that much sense to the logical, modern brain. Personally I find that, even having had experiences with fatigue, it's so hard for me to believe even my own experiences. It’s a very deeply ingrained thing that you should just be able to push through, that you’re just a little tired.

E: This is why I think chronically ill people and disabled people are oracles of the future. Alice Wong has an amazing project called The Society of Disabled Oracles. Limitless growth, limitless expansion, pushing through—we have to move away from all of that to have a livable planet and a life-affirming society. And I think chronically ill people and disabled people have so much wisdom in how to do that. But we don't have the cultural cachet where people would listen to us and respect the knowledge that comes from this lived experience. 

R: I love that. I noticed in your writing that you group these types of under-researched illnesses along with neurodiversity, certain types of addiction, and other things outside of your specific kind of fatigue and autoimmunity. And so when you include all of those people, it's a pretty big group. Not so much a fringe group. But yeah, still not a lot of cultural power. 

E: Which I think comes down to ableism and the ways we're made to feel ashamed by others.

R: Yeah. And, when you’re sick, it's hard or impossible to produce things at the rate that is demanded by the systems of the world. And so how do you work in an effective way, within those very fast paced systems, when you can't move at their pace? I don't know if you have been thinking about that.

E: Yeah, a lot. As a chronically ill person, you cannot operate at that level of production, like a healthy 23 year old, with no other responsibilities. That’s not inclusive for a lot of people. 

When I go on holiday with my friends that are all sick or disabled as well—most of them have long COVID or post-viral illness, or are neurodivergent. To make that holiday work, things have to be done, and tasks have to be completed. And sometimes things need to be produced, like a meal that we all need to eat. And there's just something really beautiful within a group like that, an easeful, emergent approach for how tasks get distributed, how someone picks something up because someone else needs to go to bed for two hours. Or, “oh, the supermarket, the lights are too bright. Can you go and grab the food.” The production of that experience is generous, totally distributed, and really seamless. 

I would love to see how that can be recreated in the context of work, particularly because my work involves bringing horizontal organizing and methods of collaboration to organizations. I've never experienced such a joyful version of this emergent organization as I have when I'm with other sick people. That's just something I hold in my mind.

Resources

All of Emily’s favorite chronic illness and grief resources are in Edition #2 of GriefSick, but there’s a lot to sift through. My top recommendations:

• The Undying: A Meditation on Modern Illness, Anne Boyer (exploring how illness is constructed, narrated and experienced in the modern world through the author’s cancer diagnosis, weaving in the stories of Audre Lorde, Kathy Acker and Susan Sontag)

• A Still Life: A Memoir, (resisting illness narratives of cures or improvement, finding meaning and beauty in the stillness of life with chronic illness)

• Ill Feelings, Alice Hattrick (a memoir about living with ME/CFS and an examination of women’s writing about illness, including Virginia Woolf and Emily Dickinson)

• Everybody: A Book about Freedom, Olivia Laing (bodies, oppression, liberation and Weimar Germany)

• The Invisible Kingdom: Reimagining Chronic Illness, Megan O’Rourke (the autoimmune diseases epidemic, systems biology, medical misogyny)

• Rest is Resistance, Tricia Hersey (resisting productivity culture).

• Newsletters: ,

I’m curious…

1. What have you grieved in your life, totally separate from losing someone? What parts of you have you lost, what ways of being have you mourned?

2. How have you been able to access and nurture a sense of inherent worth and value, away from external validation and labels?

3. At the end of this interview, Emily talked about going on holiday with her friends who are disabled, chronically ill, or neurodiverse. Have you done this? What was it like?

Meet me in the comments.

Leave a comment

Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.

*

I couldn’t get enough of this wide-ranging conversation with , the writer behind Create Me Free, and author of Crochet Saved My Life. Kathryn lives with double depression and a number of symptoms that are hard to categorize. She has spent years researching the role of crafting in healing, and particularly the healing powers of crocheting and knitting for people with chronic illness. Kathryn maintains a special outlook that, for me, is so hard to achieve: being curious about what’s on the next page of her life, even when she is in a moment of overwhelm or loss or confusion. 

You can find additional resources from Kathryn at the end of the interview.

Key themes from this conversation:

• Depression can come with a range of physical symptoms, which are often ignored or dismissed, even by the person with the illness.

• Losing productivity can be particularly painful in our culture. And even if we are able to give up our addiction to productivity, we still need purpose. For people with physical limitations, it is important to look for sources of purpose that we can still engage in without hurting ourselves. Crochet and knitting, which are portable, require little setup, have a quick learning curve, and can be used to make gifts, are a great option for many people.

• There’s always another page in our personal story. For better or for worse, we won’t be on the current page for long.

Rae Katz: Let's start with the basics. What is your illness or condition in your own words?

Kathryn Vercillo: I wish that was basic. I'll try the concise version: for a long time, I didn't know what was wrong. Then I got diagnosed with double depression, and that felt like a useful frame for a long time. It fits enough of my recurring symptoms, and medication helps enough. Then over the past five, six, seven years, I felt like the depression diagnosis didn’t fit quite as much, but neither did anything else. I have recurring bouts of fatigue and low energy. I’ve got brain fog. 

Then suddenly in the last couple of weeks it's been dawning on me that I think I'm in perimenopause. Now I don't know which things are which. I went through very bad depression last year, and now I'm thinking that was more hormonal than anything else. 

In short, a lot of depression symptoms fit, and I can use that as a lens for explaining things. But I think there’s more, too.

R: It sounds like you have a number of physical symptoms, but without a physical diagnosis. How has that gone with doctors that you've seen?

K: I’m in my head a lot of the time, and I have to work to be embodied. So throughout this whole time, I've had a lot of physical symptoms that I didn't pay attention to or didn't realize might be related. I’m very achy a lot of the time, I have headaches that come and go—not too strong, but just this constant muscle tension. And then more recently, digestion stuff. I have respiratory issues that have never been well treated–asthma, allergies, nasal congestion that I've just been dealing with for years and years. As more information has been released about "chronic inflammation," I tend to think that's at play in my body. And the more we learn about the relationship between the gut and the brain, the more I think that the mental health stuff I've always called “depression” is also related to all of this.

My doctor just wants to treat each individual symptom with a different pill. I feel like if I take a symptom to them and say, “I think it's this,” they say, “okay, here's this medication.” I am not opposed to medicine—I take mental health meds and I think there's a place for all of it. But it isn’t feeling right for what is happening now. So I am currently looking for a more holistic approach, but how to find that and pay for it and get insurance involved is a big process, and I'm not sure what that looks like.

R: Totally. This seems like a common story. 

I'm curious to hear more about your realization around perimenopause in the last couple of weeks—that seems like it would complicate things!

K: What prompted me was actually something very random. I have a dog who has not been spayed yet. So she went into heat, and I saw her heat cycles, and watching her I thought, “oh, her body has a pattern and it changes her mood and behavior in this very predictable way. If I didn't know that's what it was, I'd think she's crazy.” It suddenly hit me. I was like, “Oh, my God, I keep thinking I'm crazy.” 

That planted the seed and I started doing research. I don't have hot flashes, but I do have night sweats, and some weird sleep stuff and weird digestion stuff. It kind of all fits, again. Of course, I still don't know—the easiest way to tell if you are in perimenopause is if your period starts changing. Well, I've been on birth control for over 20 years and my period basically stopped in my early 30s. I was younger and going through other stuff, and I just didn't think about the consequences of being on hormones for twenty-something years. So now I'm still on the pill and wondering, how much is that affecting me? What are my options? 

R: Interesting. I also find it really odd that I went on birth control unthinkingly at the age of 17 or whatever. There was no discussion of potential consequences at the time. And now it’s well established that female sex hormones impact almost every part of the body, so if you're ingesting them, logically it makes sense that they'll likely have impacts way beyond your reproductive system. So that's just kind of shocking.

K: It really is. So I'm Googling and asking in forums and stuff—you know, perimenopause on birth control, blah, blah, blah. And I keep finding that, according to the internet, you don't know if you're in perimenopause or menopause because the pill is controlling your cycle. So a lot of the advice is just “stay on the pill until fifty-five, because then you'll definitely be in menopause and you don't have to worry about getting pregnant.” After fifty-five there are big risks from being on the pill. But I'm like…um, I’m assuming there are also risks when I'm fifty?

R: That’s so interesting. That approach also completely disregards any experiential impacts of going through perimenopause and menopause. It's all focused on whether you can get pregnant or not. 

K: Right. So I'm here trying to figure this out on the internet. I've been on birth control for most of my life. I’m 43. So how much has this played a role? Who knows, right? So yeah, it's a journey.

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R: It's definitely a journey. You've done some notable things to accommodate your health throughout your whole life. I'd love to hear a little more about the kinds of decisions you made early in your career to design a life that works for you in various states of health.

K: When I was younger, I thought I wanted to go into teaching or social work, but really quickly I found that I can't go to a job nine to five every day and be an okay person. It took me years to not feel ashamed about that. I thought I was lazy. I thought something was wrong with me. I pushed and pushed and pushed. But I just physically couldn’t keep going, so I needed to find a way to work alternatively so that I could take care of myself.

R: Where were you when you came to that realization—I have to do something different.

K:  I was in my early 20s when it became clear to me, but it was in my mid- to late-20s when I really admitted it to myself. But I was like, ok, what do I do with this information? It was 2002, 2003, and the gig economy and online work weren’t really a thing. I kept going back to writing because I've always loved it, and I kept trying to figure out a way to make it work. While I obviously wanted to do work I loved, I was ok so long as I had the freedom to create my own schedule and flexibility to adapt to what I needed. 

But it's still a constant up and down. Once writing online became a real job, it was great for a little while, and then I was increasingly asked to produce more and more content. And I kept trying and trying, and there were several times over the years that I got to the point where I completely just burned out and couldn't keep going. I would just quit everything, sometimes in embarrassing ways, just like fading out of all my commitments. 

And then the project was learning to be gentler with myself. I realized, oh, actually, a lot of the people I know who are making it work feel terrible. Maybe the problem is not just me. But I'm still trying to figure it out financially. I accept a life of a lot of debt and financial instability in order to have the consistency of daily care that I need.

R: You've written really openly and honestly about finances and the relationship between depression and finances. I think that's super rare. It's a hard topic, but it's relevant to every person with a chronic illness and particularly one that involves any kind of fatigue. 

K: Yeah, it's a big topic. It's so critical. With depression there's the issue of “I’m too fatigued and depressed to work, therefore I don't have money.” Then there's the issue of, “I don't have money so I'm stressed out so that's making depression worse.” And then there's the issue of, “I feel bad about myself because I am not someone who can make good money and that makes me more stuck in the depression.” And then you end up feeling like, “how hopeless is this if I need to get better in order to make money, but I need to have money in order to get better.”

I’ve focused on a couple perspective changes. I had to learn to define success and what matters to me in ways that weren't related to money. For example, I’m in a really great relationship. It took me a very long time to get there. That's success to me in my life. In my work, success means writing honestly about the topics that matter to me and connecting authentically with others while sharing stories. If I do that and I mostly manage to pay bills, then I'm succeeding. But it's hard to keep focused on that—your own accomplishments and successes that are outside of traditional stuff.

R: You have done a lot of work related to creativity and mental health—using creativity and crafting as a strategy for healing and coping. I'd love to hear about it.

K: In my late 20s when I went through the worst of the depression, right before I got any kind of treatment, I was really just trying to push through. It became life threatening, and I collapsed and could not get out of bed. As I began healing, I started trying to find things I could do that would make me feel better that also didn't require leaving the house, or socializing with people, or anything else too hard, and also didn’t cost anything.

I read somewhere that you might try to do the things you liked to do as a child. I pulled out of thin air the memory that I had learned to crochet with my mom. And I started crocheting—and I can go on and on and on and on about this—but it helped. 

R: Tell us just a little of the “on and on,” and a little about why it helped. 

K: There's a lot of science on why it helps: there's the repetition of moving your hands, and things that happen in your brain with serotonin release possibly associated with that. My experience was that I felt like I was doing something. I couldn't get away from the feeling that if I was doing nothing, I was worthless. So I had to find a way to do something, and crochet was easy and portable. I could make a gift for someone or I could make a blanket for myself. Our culture tells us: go earn money and do things for society in order to be valuable. I don’t believe in that, but I do believe we all need a purpose. Turning a piece of yarn into something is a magical thing. Using it to create a sweater that warms you or a dish towel that you use in the kitchen is a purpose. And you can intentionally build on that purpose by aligning the crafting with other values - such as making fiber choices that are sustainable.  

I ended up spending over 10 years doing deep research into crochet as therapy. I heard from a lot of people who had other chronic illnesses that the sense of purpose really made a big difference for them. A lot of these people were women who had tried to do it all—have a traditionally successful job and have kids and whatever else. And through their illness journey they realized they couldn't do that anymore. They found themselves lost as to their identity and their purpose. Even when they had all the support in the world—supportive family members who were taking care of things financially, or help with kids or whatever—they still felt like they needed to be doing something, and crochet or knitting again gave them that. 

R: Totally. I'm also a knitter and I also do quilting. But now I’m realizing that I have mostly stopped knitting in favor of quilting, and I think it’s because I felt like I was too slow at knitting. Which is so classic, right? Like, “I'm not doing this art fast enough.” 

K: Yeah, I love that. There can be all this judgment around it: I’m not fast enough, I'm not doing it perfect enough. I noticed this in my interviews and became interested in exploring how we can use the safe space of our craft or art as a place to work through some of the bigger issues. Because it’s likely that not knitting fast enough is related to all kinds of other things in your life that you're not doing well enough. 

R: One hundred percent.

K: It's very hard to tackle that in your big, big life. But if you're aware of it, you can say okay, in this one space, I am gonna find a way to give myself permission to be slow, messy, imperfect—whatever your thing is. I think it can be a little microcosm to work out some of our challenges.

R: I love that framing. You wrote a book compiling stories about healing through crochet. I obviously have an ulterior motive with this question given that I'm also compiling stories, but I’m curious why it felt important to tell these stories.

K: First of all, I think everyone needs to be seen and validated. Every single person’s story is unique and meaningful. And so it's very powerful for me to witness someone sharing their story. Often, people come to understandings or realizations about themselves through the conversation that maybe they hadn't like picked up on before. 

Beyond that, I think a lot of us learn best from stories rather than Top Ten Tips. Sharing stories of amazing people can help us recognize people similar to us who we can admire and look up to. I hope it helps change the narrative in the larger society of what it means to live well, and to live with illness. But even for people without illness—life is hard. So many people feel like they're doing it wrong. We're all actually doing okay, and so if we can learn from each other and support each other in that narrative, that feels like work I want to be doing.

R: You mentioned grief, which is a big part of chronic illness—grieving your past self and loss of different capabilities. This may have happened a long time ago for you since your illness story started when you were so young, but I'm curious whether there are things that you're still grieving in terms of your own identity and capabilities. 

K: I still have random fantasies every now and then of what I'm going to do when I grow up. I went to school to become a therapist when I was in my 30s, and I do grieve this parallel life idea where I'm a therapist. I like that idea. I think I could be really good at it. Except that I can't be good at it when I have to show up as a stable human five days a week, indefinitely, for people who need me. I know that the reality of my health condition is that I need days that I have to rest/sleep/decompress all day and that it doesn't work to plan those in advance so I can't commit to a job where other people consistently rely on me to be present at specific times.

R: Yeah. It's really hard in our culture to feel okay about an appealing life we aren’t having, and not to think “if I had just tried harder, I could have had it.” 

Before we go I just want to ask my favorite closing question—given all these experiences, I'm curious how you think about the future.

K: I’m in a weird place with this with the perimenopause stuff, because I suddenly feel old. And I know I'm not old. I'm 43. I have lots of life ahead of me. I'm going through a weird thing around that. 

But as a writer and storyteller with depression, one of the things that has often kept me going is the idea that there is something on the next page of my own story. I don't know what it is, but there's something there, and I can at least be curious about it. I am not going to be on this current page forever, for better or worse. So for the future, I'm curious. I'm curious to see what's on my next page. 

I'm also nervous because I don't have a good story about aging. My frame is that it's just gonna get harder. I’m stuck with thoughts like, “oh my god, I should never have gotten on birth control. I should have stopped it ten years ago.” I’m not someone who exercises a lot, and I want to become someone who does that for health reasons. But it's hard. So I'm having a lot of nervousness and uncomfortable feelings around that. But I also feel more in touch with myself than I ever did when I was younger. I am hopeful. And the work I'm doing, and the work that you're doing, make me more hopeful because we are all beginning to talk about this more and find new understandings and new solutions and new ways of defining our lives.

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Read more from Kathryn:

• Kathryn’s books on Amazon, including Crochet Saved My Life, and The Artist's Mind, which explores the creative lives and mental health of famous artists.

• Kathryn explains double depression

• More from Kathryn on the health benefits of crochet

• Kathryn’s Instagram: @createmefree

Meet me in the comments

1. Do you crochet or knit? If not, is there something else that helps give you a sense of purpose when you’re unable to be productive?

2. Are you able, even on your worst days, to stay a little bit curious about what’s on the next page of your life? What does that look like for you?

3. I’m so curious about hormonal birth control and perimenopause — share your experiences with both/either in the comments.

Leave a comment

Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.

Do you have an autoimmune disease, chronic fatigue syndrome, fibromyalgia, post-treatment Lyme, long COVID, or any undiagnosed collection of weird and persistent symptoms? Are you interested in being interviewed for this series? I would love to hear from you–fill out this interest form!

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Today we have the pleasure of hearing from , the woman behind Creatively Conscious. As a caretaker, Claire brings a different perspective to this series. She journeyed into the world of mysterious chronic illness when her husband Dave developed unexplained and debilitating symptoms in the fall of 2020, in the thick of COVID and just months before she was due to give birth.

Many aspects of Claire’s story left me dumbfounded, I couldn’t really fathom how she got through. It seemed to require from her some strength that is beyond human. Nonetheless, Claire’s energy and passion for creative projects shone brightly in our conversation, and it was clear that not only did her creativity survive this period but it strengthened. I was inspired by how Claire was able to hold both optimism and realism, surrender and hopefulness. 

Key themes from this conversation:

• When the available research is minimal or new, as in the case of long COVID, it is often hard to get any concrete help or clarity from doctors. This leaves us with two options: look elsewhere for answers–on blogs, on Twitter–or try to surrender to not knowing. There isn’t a right answer, but being aware of the option to surrender and not look for information can be liberating.

• Gentle arts activism is the idea we can push for change simply by coming together and sharing our voice and sharing how things are. We don’t often think of the words “gentle” and “activism” together, but in the case of chronic illness, and for anyone trying to live a slower life, this idea offers a way to engage meaningfully in causes we care about.

• All the rules are made up. The requirements of society are made up. When they aren’t working for you or your family, there is an option to reject the rules, to make up your own.

Rae Katz: Can you tell us what happened to Dave, and how it started? 

Claire Venus: Yeah, it was so mysterious. I was pregnant with my second child, Luna. It was about October time when he started feeling unwell and he was looking quite pale. My immediate reaction was, oh, yeah, but you'll be okay. He's a personal trainer and a yoga teacher, so he's really steeped in wellness–really good with all of the different ways that you can heal. But he just wasn't really getting better. At some point one of his clients who’s a nurse dropped something round, and she was like, “Have you had any bloods checked? You look a gray color, you know, things are not looking good.” 

I was really dismissive and impatient because I was pregnant, and I was like, no, no, everything's fine. I think I was in that space for quite a long time. The bloods came back and he was severely anemic, like on the cusp of needing a blood transfusion and everything was low. They tried him on iron tablets and said they couldn’t do anything else. So we were like, okay, well, all we can do is wait for an endoscopy and colonoscopy. We were also in this strange lockdown place with COVID, so we just wanted to stay as safe as we could.

And then the week Luna was due, we were getting a new fridge freezer delivered, and the delivery guy wouldn't bring it into the house. We had a tiny fridge before and we were trying to get set for Christmas time and Luna’s birth, for being a family of four. And so the delivery guy left it on the doorstep and we had to gather some neighbors together to lift the fridge freezer in the house. A week later, the neighbor who helped lift the fridge in was in hospital seriously ill with COVID. And, you know, your heart just sinks… like we hadn’t left the house… I hadn't even been to the dentist or had my hair done…

R: Oh gosh. I mean what are the odds? 

C: Yeah what are the odds. I couldn’t bear going to get tested, so Dave went and got the test. It came back positive, and we just knew I had it too. I’m about to have a baby–there were literally five days to go. Then my waters broke and that was it. I’m COVID positive at this point and so I just went to the hospital to give birth alone. It was just this whole intense, cracking open of self, because we were already so worried that something’s really seriously wrong with Dave.

R: I mean, any one of these events is a huge, intense, moment. And for you, they converged.

C: Yeah. So Luna was 10 pounds, huge! And then the recovery from that was brutal. I had lost a lot of blood, and I was coming back to a home where we were all excited to meet her but also running on empty. I was coming out of COVID, Dave was coming out of COVID, and we were still wondering what was going on with his health. That was the most I've been asked to step up in my entire existence as a human.

R: Wow. I can’t even imagine. So you have this newborn, and it sounds like Dave's health probably declined with COVID. Where was he afterwards?

C: So afterwards, we were still trying to figure it out. In February that year, he had the colonoscopy and the endoscopy and they very quickly found out that it was an h. pylori bacteria that had knocked everything off. The way that h. pylori works is it just strips out all of your good bacteria, so you basically have no good bacteria to break down any food. Your body is essentially starved of nutrients. 

So at that time, February, we didn't think he had long COVID, we thought it was the h. pylori. He had to have two types of antibiotics, and that was supposed to clear it up, but the second one gave him a huge allergic reaction. He literally stood in the bathroom covered in hives, white as a sheet. I’m there cradling Luna, on the phone trying to figure out what to do. And you know, the only thing the doctor’s office said was, “well, we'll just give you some antihistamines.” And he just said to me, “I'm not taking anything else. Claire, that's it.” 

From there, it didn't get better. There were similar symptoms to what he'd been feeling, but more intensified: tingling hands and feet, crushing pressure on his chest, heart racing like he'd run a marathon. And those first few months of going through that with the sleep deprivation of a newborn, and my healing, were just so, so intense, and really dark as well. When we were saying goodnight to each other, it was heartbreaking, we were sort of saying: “I hope I see you tomorrow.”

The doctors wouldn't do anything else. They were like; “the bloods are fine, everything's fine, you need to get some help for yourself and start grieving your husband.” 

I got on the phone to the practice managers at the GP and they said to me, “I can tell you’re very emotional, you know, obviously, you've just had a baby.” They were very dismissive.  It struck me that I had zero energy left to fight the pillars of society that prop up only those who thrive. 

R: What could be more natural in that situation than feeling overwhelmed and crying? But that's such a common story, particularly for women who try to describe these types of symptoms to doctors. Especially when the blood work looks fine, which is a blessing and a curse and a lot of ways.

C: Right. So I sort of figured out it was long COVID from reading Twitter threads, to be honest. No one else was listening to us, and all these people on Twitter had really similar symptoms. I thought he had gotten better from h. pylori, but then long COVID took over.

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R: Interesting. Was he able to get more attention for long COVID than the undefined set of symptoms?

C: So, no. There was a referral to the hospital to test his lung function. And they x-rayed his heart and found nothing. Then we had a panicked trip to the hospital because he'd collapsed in the garden. When we got there, they'd already scanned his heart a couple of months before. And the consultant just said, “honestly, there is absolutely nothing to tell you about your heart and your lungs, both are fine and there isn't anything else in a long COVID clinic like this to help you. So we have to dismiss you.” 

At this point, Dave’s perspective was: they can't help us. There's not enough science done. And this is why I took to Twitter to try to understand what people were doing. At that point, people were talking about going to Germany and having their blood cleaned, and there were osteopaths and floatation tanks and all the other kinds of stress relief stuff. And then there were certain drugs being mentioned. 

And I would ask him, I would say: “look there’s a few people who have said this drug helped, do you think we can ask for it? Can we try it?” I was just desperate to try and help him to heal. And then there was Luna, growing week by week and he was missing it. I would say, “can you hold her for a second?” And he would just look at me like so sad and so deflated, and just say, “I can't hold her.” 

R: It’s unimaginable to go through this with an infant. You wrote about that initial period, and you said your perspective initially was: “I could give him absolutely everything he needed and all my love and energy and beautiful food and make space for loads of rest and cut through all the crap life throws and it would make it totally better.” Then your conclusion is “it didn’t and I couldn’t.” And you talk about “severing your relationship with hope.” That phrase cuts very deep in me. 

I'm curious how you started to transition from: if we just try hard enough and be positive enough, we'll fix it, toward something else, and how did that transition happen? And what was the something else that you moved toward?

C: I remember we were sitting on the couch downstairs, and we were both in tears. We were beyond frustrated. And I said, “what if we were just to surrender, what would that be like?” And then Dave said to me, “I've been trying to tell you this. I've been trying to tell you this for weeks, months, maybe.” 

And I was like, I'm sorry. You know, I'm sorry. I'm sorry. Because I obviously was on a completely different path. Dave hadn’t really looked for help the same way I had. He looked more for solace. He found prayer and meditation. 

R: So interesting how people gravitate towards different approaches–looking for solutions versus looking for solace. In your newsletter, Creatively Conscious, you write about a slow life lived. I'm curious whether that was a theme in your life before this all happened, or whether that came from this experience.

C: My husband has taught me a lot about this. When we met he was working over in the Indian Ocean doing security on big shipping containers. His job was to look out for real life pirates.

R: Wow. 

C: Yeah, I know. So you're watching the ocean for well, mostly dolphins, the occasional pirate, but really not very many pirates. When we met, I was working in festivals and events, and we fell in love and it was a clash of worlds. He was watching the ocean, I was running around.

I continued at my fast pace, working in events, applying for funding, managing projects, giving it my all, and even though motherhood had shifted some of that it hadn't shifted all of it. It was the pandemic that shifted all of it. At the beginning of the pandemic, before Dave got sick, from like March to October–those were the best months of my life. I just realized how much energy I'd been pouring into everywhere else but here. We walked down the street and watched frogs. We played in a tent in the backyard with the kids. I just…felt alive. 

R: From your writing, it sounds like your creative work gives you energy, even during the times of intense caretaking. I’d love to hear how you incorporate your creative projects in a way that doesn't add to the pile of things you need to do, but it's actually energizing for you.

C: Yeah, it’s a lifeline. 2008 Claire would plug in everywhere in anywhere. But at some point I was like, no, no more. I wanted to do only what I could see was a need in the world, and I got really passionate about gentle arts activism.

R: Can you explain what you mean by gentle arts activism?

C: To me, it’s a recognition that we can actually move the dial and push for change by just coming together and sharing our voice and sharing how things are. Things like this interview. The whole reason I started on Substack was just to move away from social media and towards this other type of coming together. I was just like, I just need to write, I need to write how it is and how I'm feeling because I can't find any comfort anywhere else.

R: That’s lovely. So often creativity gets squashed in these intense periods, but for you it sounds like it kept you going through something extraordinarily hard. 

C: Absolutely.

R: Can you talk a bit about the impact that the intense caretaking had on you–on your mental and physical health?

C: There was a moment, about nine months after I had Luna, where I was winding the Hoover cable up, and you've got to just do this motion over and over. And one day I was doing it, and I was like, oh, this felt easy. That's new. This is me healing, and it’s slow, and society doesn't give space for that. And I'm guilty of that as well–trying to push through and still physically do the jobs around the house that Dave couldn't do. I would have a pain and go to my yoga teacher and say, “do you have any exercises? What can I do?” And she was like, “rest.” 

So that Hoover moment–it sounds so bizarre–but it was really poignant, physically embodying this moment of balance. I've always found it difficult to have a sickness, a cold or something. I'm always like, well, I've got things to do. So that gentler conversation with myself–even if it takes nine months or however long it takes–that’s ok. It doesn't make me less. I could have told more people how I was feeling and how much I was struggling in my body. 

R: What else was going on in your body during this insane convergence of difficult things?

C: I was having some other symptoms, like sleeplessness, then waking up in the night with my heart racing and mind racing–it felt like insomnia. Then there was something else–the only way I can describe it was I just didn't feel like myself. I ended up going to a doctor and she was very gentle, she said, “do you understand how hormones work?” And I was like, “Well, yeah, sort of.” And she said, “With everything you’ve been through your hormones might be out of whack. This sounds like early menopause, and it's not even really that early at 41.”

So it seemed like my body was just saying no, you need more than this. Then I had to figure out whether I was going to accept that this is menopause starting. And here’s what we did: we booked a holiday abroad. We were all round in circles, you know: Dave should go on his own, or I should go on my own, or I should just go with my daughter. And then we were like, no, we all just need to come together and make this work and just have ten days in the sun. So we did.

R: Good for you. It’s really hard to book a vacation in those moments. 

You've been through so much in the last three years. I'm curious how you think about the future.

C: I remember this time when I was homeschooling my son in the pandemic. I had a newborn daughter, my husband was stuck in bed. And I was on the phone to the teacher saying, “I can't do this.” We had all these schemes of work, and had to log into different things with all these passwords, and I was two weeks postpartum. I was really trying not to cry to his head teacher, but she could tell, and she said to me, “there are lots of people in your situation.” 

And I just thought: that's not good enough. I'm being asked by society to home educate my child, and I really want to do that, but I also feel helpless, like who's holding the mother?

That’s when I started to think: I'm going to do things differently, and I started saying that out loud, whether that's to a friend or whether it's on Substack, saying, “no, no, we get to choose, all the rules are made up. The rules are made up, society is made up, so what if we just say no.” 

Dave's been doing loads better since our holiday in March. There was a bit of a dip when we got back to the UK, but we're in summer now and he's been doing really well–he's taking the kids out tonight, and that's amazing. That just wouldn't have happened six months ago. There's a part of me that knows that even if things flip back the other way when autumn and winter comes, I've got more of a choice, I’m just not going to do whatever society is asking me to do.

R: I think this kind of reaction–saying no–is forced on many people by chronic illness. The question is, do you say “no, I can’t” with defiance, the way it sounds like you have, or do you do it kicking and screaming and trying everything to avoid it? It’s really cool to hear that framed as an inspirational choice, versus a failure.

C: Yeah. I just feel like it's about questioning what we're being called to do. Even if we're living a life that nobody else understands, and even if society at large doesn't make space for it, it’s still our life, isn't it? It's not anybody else's life, it’s ours.

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Meet me in the comments!

1. Have you been the caretaker of someone with a mysterious illness? Any tips for caring for yourself through the especially difficult times?

2. Do you have experience with an illness that doesn’t have much research behind it yet, like Long COVID? What is/was that like?

3. Have you ever had this kind of awakening or moment of defiance when you realize your life is just not working anymore and it’s up to you to start living for YOU, even if no one else understands?

Leave a comment

Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.

Do you have an autoimmune disease, chronic fatigue syndrome, fibromyalgia, post-treatment Lyme, long COVID, or any undiagnosed collection of weird and persistent symptoms? Are you interested in being interviewed for this series? I would love to hear from you–fill out this interest form!

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I had the pleasure and honor to speak with , teacher, author of the newsletter The Underachieving Overachiever, and someone who reads widely and thinks deeply about chronic illness. Louise lives in Melbourne, Australia and has myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as well as a host of other diagnoses. I walked away from this conversation with some powerful nuggets that altered my body awareness in the weeks following. After hearing Louise describe her perspectives on the relationship between her fatigue and her nervous system, I found myself checking in with my nervous system at random times throughout the day. To my surprise, I noticed that any time I check in, whether I’m feeling stressed or not, I find that my muscles are tensed and my body is clenched all over, as if I’m about to throw a punch. This is a profound realization, and I’m still figuring out what to do with it. I hope this conversation opens a little window into the workings of your body, like it did for me.

You can find additional resources from Louise at the end of the interview.

Key themes from this conversation:

• The nervous system is intimately connected with certain physical chronic diseases. A stimulus that seems purely physical, like mold exposure, may prompt nervous system reactions, and conversely, nervous system excitement can cause a cascade of physical effects.

• Perfectionism is deeply rooted in our society and schooling. For people with perfectionist tendencies, the rules, grades, and structure of our schooling system tends to encourage and stoke these tendencies. Perfectionism is particularly challenging in the context of chronic illness, because perfect health is an unrealistic goal (for almost anyone).

• The writing process can mirror the healing process: slow, winding, frustrating, and often it’s difficult to perceive progress when you’re in it. This parallel can make writing a powerful tool in healing.

Rae Katz: I’d love to hear in your own words what you struggle with and how it started for you.

Louise Burn: So in hindsight, I've been unwell for a while. I've always had bad fatigue and mood swings, and over the years it feels like I’ve gotten every diagnosis under the sun for different things. But I always managed to bounce back, even though sometimes I'd have to take time off work. This started around age 15, and it just progressively got harder to bounce back. 

This pattern is really common with chronic fatigue, I now know. For me it culminated in this massive health crash at the end of last year, when there were a lot of stressful changes in my life. I hate using the word “crash” but can’t think of a better word—I basically couldn't get out of bed, just going to the toilet, maybe making one meal a day, and that lasted for a couple of months. I had to move back home and quit my teaching career because I couldn't cope. And then I've slowly been making my way back to some sort of normality. 

So that's the short story. And then along the way I found out about a mold exposure, and I got diagnosed with chronic fatigue and mast cell activation syndrome. And then adrenal fatigue as well–you know, everything, depending on who you talk to. Oh, and I had COVID twice as well in there.

R: I’d love to hear a little more about your journey getting diagnosed. 

L: I was seeing just a regular GP for a couple of years, and I would talk about the fatigue and anxiety and depression, and things like that. But it was the sort of typical story—no long term fix. Then last year, I was moving to a different part of the country, and I was seeing different doctors as I traveled up to our destination. And one GP flagged fibromyalgia and then prescribed an antidepressant.

R: The doctor flagged fibromyalgia and then gave you an antidepressant?

L: Yeah, yeah. And I didn't know it was an antidepressant. So she gave me this medication and was like, “just take this.” And I had just come off antidepressants before I left on the trip, because I felt like I was doing okay—it was a whole process and I weaned myself really slowly. 

So I Googled this new medication and I was like, “oh, it's an antidepressant.” And so I obviously didn’t want to take it, and I started to research like crazy about fibromyalgia. That’s how I came across chronic fatigue syndrome, which I flagged with the next doctor, and she didn't really know much about it. So I was researching and researching, and I started joining Facebook groups, which was a blessing I guess because it helped me get to this point, but it was also…I find them terrible places to be.

R: Can you say more about that?

L: Yes, well, I think one of the themes of my journey has been fear. Now that I understand a little bit more about mast cell activation and chronic fatigue and the nervous system, it’s clear to me that being in those spaces when you don't have the rationality to think clearly about what's going on will stoke a lot of fear. For example, there’s a statistic that floats around everywhere: ME/CFS has a 5% recovery rate. I wasn’t in a mental state to consider: what does recovery look like? Who is in these groups? Where does that statistic come from? So all I saw was: I'm gonna be in bed like this for the rest of my life. 

I ended up going to see an integrative specialist. And I was lucky that I was financially able to afford that at the time, because it's very expensive. They took me more seriously. I did all the testing—all very expensive—and it turned up mold exposure. Since then I’ve been working with a nutritionist and a chiropractor as well. I haven't been able to take really any medication or supplements, my nervous system is apparently too dysregulated. 

R: Can you talk a little more about how your nervous system relates to all of this? Because I don’t think it’s necessarily intuitive. I'm curious how you would articulate the connection.

L: Yeah. The psychologist I’m now seeing said that half the battle is getting people to understand that connection with the nervous system, particularly because it can feel like victim blaming. You know, “it’s all in your head” kind of thing. 

With the mold exposure, basically my understanding is this: Some people have bodies that can’t recognize mold as a toxin. So your body knows something’s wrong, but can’t effectively identify and get rid of it. In this case, mold actually affects your limbic system. Your nervous system is lighting up all the time telling you something's wrong, there's danger here, you need to get away. But you can’t get away, so you're just always reacting to a threat. 

R: That's really interesting. There is a line from one of your pieces where you wrote, “I spend the majority of my day trying to calmly navigate the adrenaline surges that occur over and over again, a process which can be triggered by something as simple as a thought.” And my own reaction to this was: wow, even if I know that might be true, it’s really hard to accept that just a thought could trigger such a profound physiological reaction. I'm so trained to separate the two. 

L: Yeah, and that's what I’m working on with my psychologist, really slowly. At the moment, it's all about just recognizing sensations in my body. She explained fight, flight or freeze, and I’m trying to be able to recognize where I'm at in the cycle, because it seems like I'm stuck in fight/flight/freeze, and I can’t get my sympathetic nervous system to calm everything down. That's why I have issues with digestion and sleep. And I know there's a lot of conjecture here, it's all theories, but for me, it helps to understand and navigate that fear side of things. So even though this psychological work is not guaranteed to make me better—there's still physical stuff going on—it can help make sure that cycle doesn't perpetuate itself over and over again. 

Now sometimes I'll get a big adrenaline surge out of nowhere, and then I'll have to go back and say, okay, I was thinking about this one thing. And I had a runaway thought, and now I’m in this spiral. But when you're not looking for it, it just feels random.

Another concept that has helped me is the idea that when you get really fatigued or really depressed, it's your body's way of saying, I'm overwhelmed with the situation. So reframing my fatigue like, my body's trying to do the right thing. 

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R: Totally. You write a Substack called The Underachieving Overachiever. And I love your reflections on the nature of our twenties when we're overachievers. I'm curious to hear what you think about the relationship between what you did in your twenties and where you are now. 

L: It's been a journey over the last couple of years of trying to understand all of this. Last year, when I was flat out, I learned that I might be neurodiverse as well. And so as I started going deep into learning about that, I was like, okay, I understand now why I may have fatigued myself. 

I learned pretty early on that I was very good at performing in a certain way. It was my identity to be the smart one and the good one. And I guess the older you get the more societal pressure there is on you, particularly as a woman, to perform in certain ways. I always saw that as a strength of mine that I could adapt, and I could take on more and more, and I look back now and I'm like, it was insane. I was just a teacher, I had a regular job, but teaching in itself is never ending. There's just a never ending list of things to do. I was also really into social justice, so I was always taking on all of these things outside of work. And when one of my friends got really sick about five years ago, and she had a little baby at the time, I saw it as my responsibility to help out with that as much as possible. 

So I was burning myself out at every possible turn, and I understand now that it was based on this core belief that I wasn't good enough, or I needed to prove myself. But also I think our society normalizes this behavior. There's been a lot of anger I've had to work through around how we just normalize this level of stress, how we normalize doing this much.

R: I relate to so much of that. 

L: Yeah. And then for me there’s all this anger because I always exercised, I did yoga, I’ve always eaten really well, like probably to an extent that I was pretty obsessive about food. But, you know, I did all the things that I was meant to do to look after myself. And I was still sick all the time, and I just was so frustrated about that. 

R: From reading your writing it is clear that one way you cope is by writing. You also write about writing while sick, and what that process is like. I love this one idea you had, which is: you might fail at growing a big audience, or making money with writing, or writing the best short story, but you can't fail at writing because you are doing it every day. If you’re writing, you can’t fail at writing. I'm curious what role that has played in terms of coping.

L: I’ve always journaled, and I had to make this big mental shift. I previously just saw writing as published. I was an English teacher, and I would tell my students all this rhetoric about failure—you can’t fail if you’re trying. But I didn’t believe it for myself. And so eventually I tried to think: how would I talk to a kid who was in the same boat as me? 

My journaling always helped me process my emotions and everything that was going on, it always helped me feel a release. But then there was the real writing, you know, actual writing that I was putting out there. And that, to me, was an extremely stressful process. It got so bad that I didn't even want to write things for my students, like practice essays or whatever. Because I was just so stressed about what other people would think. 

And so the writing process with this newsletter has been me trying to overcome that fear. It's not easy because the fatigue and the brain fog makes it really difficult to write. When I do write a piece, sometimes I have a little dip in my health afterwards. But for me, this writing process has become representative of what I think the healing process is going to be: I just have to put one word down. Sometimes I've set myself the task of doing 10 minutes a day or one sentence a day. And trying to feel like that is enough. 

R: That's a really interesting parallel to draw between the writing process and the recovery. One of the topics that you seem drawn to is perfectionism. I’m curious to hear how you think about perfectionism and the role it has played in all of this.

L: I guess the word has been bandied around in my life for a long time, but I didn't quite understand the depths of perfectionism. I think our culture encourages it, you know, particularly around things like fitness and health. I was never satisfied. I was always like, there's this structural thing wrong with me, or my diet could be better, and it just becomes crippling because of the amount of things that you can't do.

I feel like these days within the medical community, and particularly within Functional Medicine and alternative medicine, there is this striving for perfection. All these different tests are showing that I'm broken, everything is broken. My natural response is to feel like I'm never gonna get any quality of life back. How can I? I've had to do a lot of reframing around that. Because, yeah…perfection doesn't exist. 

R: That’s an interesting observation that the medical communities, both Western and alternative, do strive for perfect health. And that this could be extremely painful for a perfectionist whose body isn’t meeting that bar.

L: Yeah. Because you feel like a failure, and that's where a lot of the self blame comes from. It's like, I've done this to myself, I'm not trying hard enough to get better. Because they're telling me that I have to just take these fifty billion supplements and do this and that, and there isn’t the recognition that it's inaccessible for a lot of people for many reasons. 

R: I know you’ve done some thinking about how schools breed perfectionism, as someone who has been a student and a teacher. I went to an all girls private school, and I think I received a lot of gifts and a lot of curses.

L: I went to a private girls school myself. And then when I was teaching, I taught in a private boys school, and then I ended my career teaching in a really exclusive private girls school. So I've been looking at the competitive nature of schooling, and it's becoming worse, I think. Here in Australia, you get one score at the end—you do 13 years of schooling and you get a score which then allows you to get into university. So from a really young age, you know you have to compete against your peers. The score is out of 100, and I got point-seven-five off what I wanted, and for years I just couldn't live with myself. I was just like, I didn't work hard enough.

R: You sent me some favorite writers who write about this topic. I was wondering if you could speak to any one of these that has shaped the way you think about the journey that you're on.

L: I was really influenced by Dr. Claire Weekes. She was an Australian doctor in the 60’s and 70’s who had a nervous breakdown and took what she learned from the experience to help her patients. She wrote a number of books about nerves and nervous illness that weren't recognized much at the time. But now they’re having a resurgence. For me it was really helpful to just understand the nervous system and how my brain is reacting to things. It helps me to accept that it's not my fault, that this is just my brain trying to protect me. 

This is so important because fear is a huge part of this disease. I wish someone had told me that. You start hearing about all the things that are wrong with you, and you obviously have a fear response, and it can be really hard to navigate that when everyone that you're speaking to, including medical professionals, are feeding into that fear. And this affects your physical body, too. So I think self compassion for yourself in that state is critical. 

I wish there were more recognition around the effects of this fear within the medical profession—you're dealing with really sensitive, highly stressed out people who are likely to have a negativity bias at the moment, just listening for everything that's going to confirm their worst nightmares. 

There's not a lot of help in navigating all that, and that's something that I would like to see change. People don't have to get so far down into the depths of despair with their illness.

R: That’s such an important goal, and something I hope we can work towards as a culture.

Further Resources

With some comments from Louise!

Dr. Claire Weekes book list—Her books are written as though it is your grandmother speaking to you. I found that incredibly reassuring when I've been overwhelmed by fear, especially when my loved ones really struggled to understand what was happening.

Dr. Claire Weekes bio—This is an article about her as a person, written by her biographer (I think she is just amazing and understanding her background helps)

ME/CFS Alignment Recovery Program—A caveat—I am not 100% sold on recovery programs for ME/CFS, as I think they tend to gloss over what 'recovery' means and looks like. In saying that, I have found some useful tools in this program, and Daniel, its creator, has managed to curate a lot of helpful resources over his 7 years with the illness (being bedbound for a lot of it) and many years of coaching other people through their own healing journeys. It is also donation based, which is rare for these kinds of programs. Although I don't agree with all of his views, I do admire that Daniel doesn't gloss over what he sees as 'recovery': requiring you to make huge shifts in your life so that you can better adapt to how your body is, rather than what you think it should be.

…And some books!

Man's Search for Meaning by Viktor Frankl—Helped me with perspective shifting and understanding that good things can be found in even the most awful of circumstances. It gave me a sense of hope when I really needed it.

Toxic: Heal Your Body by Dr. Neil Nathan—This book was key for me in understanding the role mould was playing in my illness, and why I was having so much difficulty with treatment regimes. It is well-written and hopeful, which I think is key when you're going through something like this.

Burnout: The Secret to Unlocking the Stress Cycle by Amelia and Emily Nagoski—Another book that was really foundational in my understanding of my body's response to stress. They also have a workbook that you can buy, that helps you work through each of their strategies on an individual level. Amelia is also autistic, and so this is a great resource for those of us who are neurodivergent as well.

Your Own Kind of Girl by Clare Bowditch—Clare is an Australian musician and this is her story of dealing with grief, anxiety and compulsions. This book was how I found out about Dr. Claire Weekes, as Bowditch used her approach to get better. Her story is a hopeful one, but doesn't gloss over just how difficult the healing process can be. I suggest the audiobook as you get more of a sense of her world.

Thanks to Louise for these wonderful resources and commentary!

Coming up…

The rash blooming on my legs day after day was not the first weird body thing that had happened to me recently. In the previous six months, I had started having recurring sinus pain and colds, which seemed to emerge every two weeks or so. I was regularly waking up exhausted even after getting ten or eleven hours of sleep. I had noticed minor, periodic heart palpitations, where it felt like my heart was skipping a beat every so often. I had developed chronic diarrhea, pooping liquid six to ten times a day. Each of these symptoms was not debilitating on its own, and each individual thing was possible to explain away: it’s cold season; maybe I was lactose intolerant; hearts just do that sometimes; who isn’t tired these days? Looking back, it all seems highly concerning, but as I made the rounds to various specialists to investigate my ailments, the general theme was “it’s probably fine.”

This excerpt is from The Rise of Autoimmunity in the West, an upcoming essay about the mysterious and undeniable growth of autoimmune disease in the western world. To get the full essay, please consider a paid subscription!

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Welcome to the Lady’s Illness Library. This is the first installment in a collection of stories from people who have gone on complex or unconventional illness journeys, like autoimmune diseases, chronic fatigue syndrome, fibromyalgia, post-treatment Lyme, long COVID, and any undiagnosed collection of weird and persistent symptoms. And by the way–all of these affect majority women, mostly for unknown reasons. A big shoutout to Sarah Ramey for inspiring the name of this collection!

As an avid reader on these topics, I have often come across writers who say things like, “I spoke with hundreds of women who have these illnesses,” and every time I think: I want to hear those stories! The internet is chock full of quick tips and tricks, and stories about how “I ate such-and-such a brand of supplement and everything got better, so you should too!” I have found this type of thing wholly unhelpful and demotivating as I have waded through my own health journey.

Here, I will try to provide an antidote to all of that. These stories aim to be ​​exploratory and honest rather than prescriptive, exploring the human experience of murky chronic illness and what happens when a person is thrown into such difficult waters. We will honor the complexity of these experiences and the individual nature of each journey. We will also try to find the light and the humor within it all. I hope that these will spark thoughts, conversations, and ideas among the community of readers who are experiencing chronic illness, and increased understanding among those who are not. Having a multifaceted, sort-of-undiagnosed, debilitating disease is more common than ever, and yet still lives beneath the surface of our culture. Let’s change that.

Are you interested in being interviewed for this series? I would love to hear from you–please fill out this interest form!

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I am so grateful to our first interviewee, of Armchair Rebel. Formerly working in the funeral industry, Michelle’s myalgic encephalomyelitis/chronic fatigue (ME/CFS) syndrome has put her on medical leave for the past year. I couldn’t have asked for a more thoughtful and honest conversational partner to kick this series off, and she made me laugh even while describing unimaginable trials. I was stunned at Michelle’s generosity in sharing all the ins and outs of her story, and there are moments in here that I will remember for a long time. Michelle was generous enough to dial in in the early morning from Melbourne, Australia.

You can find additional resources about Michelle’s illnesses at the end of the interview.

Rae: Let’s get into your story: what is your illness, in your own words? 

Michelle Spencer: My most recent chronic illness is Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I’m a beneficiary of good primary care…my doctor has known me for nearly twenty years, and I didn’t face the barriers to a diagnosis that a lot of people with ME/CFS do. I had previously had episodes of post-viral malaise, where you get over the virus and the fever and all of that, but you just kind of stay really unwell for awhile. But I’d always recovered. The most recent time was two years ago, just as COVID hit, I got shingles, which is the reemergence of the chickenpox virus from the childhood illness, and that laid me quite low. For several months my eyes hurt every time I looked at a screen. That was my first real taste of severe disability, lasting for a few months. But it got better. So I started working 60 hours weeks again…which…you know, in retrospect I regret. 

R: Ah, well, I can really relate to that.

M: So this time around, in January of last year, I got really sick with a virus. It was in the middle of another COVID reemergence, and you couldn’t get a test for love or money. Even our government was saying: don’t go to hospital unless you can’t breathe or are having a heart attack. So we dealt with it at home, but I was sick enough that I would have gone to hospital normally. My doctor had to give me the anti-nausea tablets you usually give to people who have cancer, just so I could keep water down, because she was so keen to keep me out of hospital. She said, “whatever you’ve got, you don’t need COVID as well.”

So, you know. We survive. And then we go on. I got to a plateau, and then I never got any better since then. I had googled my symptoms—like extreme fatigue after any exertion, brain fog, muscle pain, dizziness, speeding heart rate, sore throat, digestion issues—and I knew a couple of people with ME/CFS, so I had some idea of what might be wrong, and I was… concerned. I remember going to my doctor and saying, “so what exactly is the moment where post-viral malaise becomes chronic fatigue syndrome?” And she just looked at me very compassionately and said, “oh honey, we’re there. We’ve been there for awhile.” And I was like, ohh. This is my new normal. And then there were feelings, there were a lot of feelings. Relief because, I guess, yeah, the shoe has landed. But also, “no, wait, no that can’t be right! But I can’t argue because you’re my doctor and I trust you!” 

R: It sounds like you have a unique relationship with your doctor. You mentioned that she knew you for twenty years—that alone, at least in my world, is incomprehensible! 

M: Yeah, this type of doctor isn’t that common here either, and I thanked her later for helping me over that threshold so well and being accepting. And she was kind of pleased and kind of affronted, if that’s the right word. She said, “I’m a doctor and I’ve got a few years of experience. After a while you know your patients, and you just know.” She said she calls me one of her “sickies”—people for whom she didn’t have a name, but there was something going on where they needed a bit of extra care. 

R: That really speaks to the value of having a long history with your primary care doctor. You mentioned that, in addition to panic and fear with that diagnosis, you felt a sense of relief. I was wondering if you could talk a little more about that relief, because it seems like an unexpected response to a diagnosis like that, but also a common experience in these situations.

M: You know something’s going on, even if you don’t have a name for it. We’re all very good girls. We’ve always been able to dig deep and carry on and be gritty, and of course that is the opposite of what is required in this moment. So there’s the relief of like, there is a reason, I’ve been told I’m not imagining this. I guess it’s relief because you’ve stopped gaslighting yourself: that voice in your head that’s been going: stop being lazy, get off the sofa, get back to work, I know your eyes start going bright red and blood shot when you’ve been looking at the screen for two hours, but that’s just you being weak.

R: “Most people can handle it.”

M: Yeah, most people can handle it, most people don’t have these problems. Why is it so hard for me? And of course, the minute the ego feels that it is defective, it goes “no I’m not, I’m strong. Get back up there and just hammer on through.”

R: I was really struck by a line in one of your recent essays. You wrote: “unless I perform as if I don’t have these limits, my worth and my welcome is on the line.” This seems like an underlying driver for the absurd levels of pushing through. If you don’t perform, are you going to be a valued and welcomed member of society? 

M: Absolutely. Before all this, I had chronic migraines. Initially I had the odd migraine occasionally, then I would get them once a month. Then over the course of a few years, in particular as I headed into perimenopause, they got feral, I mean really bad, to the point where I had back-to-back multi-day migraines, and it was hard to tell what was the little breaks between migraines. Life got very difficult there for a while. A couple times in the past I tried to volunteer when I was between jobs, but because of the migraines I couldn’t guarantee the ‘four hours every other Thursday’. One time I was thrown out of a writing group because I wasn’t filing my stories regularly enough. So belonging, even outside of work, becomes difficult.

Then eventually, I had a bad enough migraine I ended up in an MRI machine because I was having some neurological symptoms. On that occasion I lost feeling in half my body for the evening. I was waiting overnight to go to the doctor and see what’s going on, but I was a bit afraid to go to sleep to be quite honest, in case I didn’t wake up. So I lay there quietly trying not to disturb my husband. And I later found out—like months later—that my husband lay there very quietly checking that I was still breathing and not disturbing me so he wouldn’t wake me up all night. So it was a very Gift of the Magi moment.

R: Wow, what a story. And what an experience. As someone who has never had migraine, it is hard for me to even imagine what it is like. I think that’s common with these types of illnesses, and maybe all illnesses—it’s very hard to relate if you haven’t had a similar experience, which increases the isolation. I’ve noticed that in your writing you refer to your illness/disability. Can you talk about your choice to use the word disability?

M: Sure. I’ve started using “disability” partly to normalize it, and because I am less abled than I was before, but also because it’s such a scary, scary word. Oh, people’s pity. I mean, God bless people, they love you, but they treat you like you’ve become a useless thing. They don’t mean to. And I’ve probably done it to others in the past. But that does not help.

R: I don’t think we have the language or skills to handle this topic in our culture. 

M: Yes. At least I work in the funeral industry. We actually have an understanding that bodies actually stop sometimes [laughs].

R: That’s a really interesting aspect of your story—that you were working in the funeral industry. I know you’re also working on a book about how working in the death industry taught you about life. I am curious if and how that experience informed your reaction to this diagnosis and health degradation. 

M: I think a lot of my reaction just comes from that whole good-girl thing. From the inside it feels like I’m lunging around from crisis to crisis trying to show up and not get caught out. But I’ve always been praised for being capable and adaptable. I kind of thought, “wow, I’m getting away with it.” 

But when I started working in the death industry and being much more involved on a day to day basis with the bereaved, it changed something for me. I started arranging funerals accidentally because we were short staffed during COVID. The first three funerals I arranged were for women who were younger than me. I’m only 55 now. I mean, you know that people your age go out before you, but I just felt like the universe was maybe giving me a little bit of a nudge on that. 

So I had already started to reevaluate this whole course of the rest of my life and how long that might be. You know, I fully intend to live into my nineties, but the ball is not entirely in my court. Even so, the only reason my doctor got me to stop working is she pretty much ripped me a new one. When I broke down in tears and asked for medical leave, she told me: “I’m only writing you the certificate if you promise me you will actually take all the time off, you will do no work. You will not manage the transition of your team, you will not troubleshoot your own medical leave.” And I looked at her—I was quite shocked because she’s very gentle—and I went, “what do you mean?” And she said, “Michelle if you don’t stop, you are going to be permanently disabled, and worse than you are now, and I don’t want that for you.”

 R: Wow, fierce. I love that, and I’m jealous because I haven’t had a doctor like that. One of the common problems for people with these illnesses is you’re seeing all these different specialists, and they aren’t coordinated with each other, and oftentimes they don’t know you that well. I’m curious what your experience has been with specialists and coordination, particularly in the context of Australia’s universal healthcare, and how much you feel like you have to be your own expert and advocate.

M: Because this is not my first rodeo, I know that I have to manage my own wellness. The reason I have this doctor is that I had my first weird illness that knocked me flat when I was nineteen at University. I saw a couple of different doctors who told me that I was imagining things, and asked if I had just broken up with my boyfriend or if I was stressed about my exams. It happened that I had taken the day off to go get my eyes tested, and the optometrist couldn’t take a reading because I was so ill that the muscles in my eyes were apparently just randomly finding depths of field. And he asked me, “oh my God, have you just gotten out of hospital?” And I said, “No.” And he just looked at me and said, “you need to go to another doctor dear, you’ve been very sick, the eyes don’t lie.” So I went off and found a doctor who would listen. You need a doctor who knows you. Even if you’re only going in for a Pap smear every couple of years. You just need to build that credibility. 

I still get terrified seeing a new doctor. I was recently referred to a rheumatologist, and I even had a recommendation through someone I knew saying he was the best rheumatologist for ME/CFS. I was still so terrified before I saw him that my blood pressure was spiking. He said to me, “oh, your blood pressure is pretty high,” and I said, “that’s just because I’m meeting you for the first time.”

R: That’s so relatable to have the feeling of fear going into a new specialist. It sounds like ultimately, you have had to be your own expert and advocate, and obviously that takes a ton of energy at a time when you don’t have a lot of energy.

M: And we don’t have a lot of self faith in that moment. Our identity has just taken a hit. And then suddenly we’re being harshly judged at a time when we’re also really questioning our judgment.

R: This question of identity is a great place to land. I think one of the signature experiences of this kind of health crisis is it completely pulls the rug out from under your identity. Maybe formerly you were a runner who worked a lot and was ambitious, and then suddenly none of those can apply anymore. That process involves a lot of grieving. I’m curious to hear about that grief process for you. 

M: I sometimes feel like I’ve died and become a new person. Certainly that identity—Before Michelle—she doesn’t exist anymore. I can’t do her anymore. I sometimes feel like she’s haunting me and getting me into trouble. You tend to want to do the things you’ve always done, like with friends and family. Someone will say, oh, we’ll just go over here, and we’ll just go over here, but I know, when I’m focused, that there is no spontaneity. The new spontaneity is fully preplanned, because my window of tolerance is so narrow. But you know, once I’m out with people I’ve known forever, it’s really hard for me to maintain my boundaries, because it’s like old me takes over and she just wants to do her shit. And I’ve got to be the fun police for everyone—my partner, my family, my friends, and for my old self. 

And then there are occasionally times when I’m just chugging along in my new life in my new groove and I think, “you know, this is kind of ok. If it could just be like this it would be ok.” Because I struggle with even being allowed to have joy in my new life, particularly when I’m facing the fact that I might have to go on disability. You’re allowed to be on disability only if you’re really broken. You’re not actually allowed to live a good life. 

R: This idea that if you’re sick enough not to work, then you don’t deserve joy…that’s a profound statement. It resonates with me, and I hadn’t thought about it in those terms. Joy is only for the productive. 

M: Yeah, rest and joy. We have to earn rest. We also have to earn joy. It sort of explains how we treat old people too. Because they cease to be productive. 

R: And we’re all doomed for that unproductive state. Look at me—I automatically used the word “doomed.” We’re all destined for that unproductive state at some point. And the question is, can we accept that? And can we accept people who are in that state at various stages of life for various reasons? I think it’s an important question that has a really sad answer right now, but maybe we can shift that a little bit through the next generation as people become more aware.

M: I hope so.

R: Me too.

Resources from Michelle

Migraine

• Australian Migraine Association: Migraine basics from the Australian migraine organization

• The Keeler Migraine Method: This book on migraine helped me a lot more than most.

ME/CFS

• Health Rising: Science-led and lived-experience community recommended by my rheumatologist. Some patient stories. A lot of frustration along with hope.

• Study on ME/CFS awareness: A summary of a study showing extreme lack of awareness among doctors about ME/CFS

Chronic Illness

• A Chronic Entrepreneur: Inspiration that you can be an entrepreneur or business owner with a chronic illness

• Gauri Yardi: Gauri’s work on ‘Creative Burnout’ has helped me slow down and still get (some) things done, while being kinder to myself. Highly recommended for all 

• Feminist Survival Project: A useful concept when dealing with illness that slows you down, told with humor

• Cori Carl’s No Saints, No Charity: A newsletter is full of excellent links that challenge ideas of illness, disability and care work

COMING TOMORROW: Enjoy this brief excerpt from my upcoming essay on starting a company in Silicon Valley as someone who felt like a complete outsider…

The belief in the Valley, I’ve come to see, is that people like this can in fact start a company where they don’t know shit about shit, can learn quickly and adapt and bring new creative ideas to the endeavor, and, once in a while, they can be very successful at it.

I was not one of these people. I was very good at applying to highly selective organizations, and I was very good at doing homework, and I was very good at exams. I was highly practical in my evaluation of what is possible in the world, I was somewhat risk averse, and I leaned pessimistic.

Eventually I did learn, in the great meat grinder of Silicon Valley, how to believe I could do things I had never done with no real evidence to back up that belief. But that would not come for a long time.

So I set out to raise two million dollars. It was early June, and I had heard that VCs all vacation in August. The clock was ticking.

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Meet me in the comments!

1. Have you ever gotten a diagnosis that incited both panic and relief? What was that experience like?

2. Do you have any tips for not gaslighting yourself about your pain, even if you haven’t received a diagnosis?

3. Do you ever feel like your illness is compromising your ability to be a “valued and welcome member” of society?

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