I do deserve to be okay

Ema Hegberg on finding an effective care team, embracing cyclical living, and starting to believe she deserves to be well

Art by Stephanie Davidson, written by Rae Katz

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.

***

Ema Hegberg

is the extraordinarily thoughtful writer behind

Peace of the Whole

. 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?