Fear, Perfectionism & Writing As Healing

Louise Burn on ME/CFS, mold exposure, and nervous system dysregulation

Art by Dan Segal

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

Louise Burn

, 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!