How My Chronic Illness Led to an Eating Disorder Relapse

To be honest, I don’t even know how to begin this post. I’m embarrassed, I’m ashamed, and I’m deeply saddened that I’m writing it at all. That’s why I’ve been so silent on this blog (that, and I’m studying for the GRE). But while I wish that I could pretend that this never happened, I know that maintaining a facade of perfection isn’t helpful to me, nor is it helpful to anyone else who might be struggling with the same thoughts or feelings that I am.

So, here it goes: I’m currently recovering from an eating disorder relapse. And while I recognize that recovery is not linear, and relapses are a part of life, it’s hard not to feel embarrassed when my eating disorder recovery, and using diet to manage my chronic illness symptoms, has been such an important part of my online presence.

I think it started with this blog post (TW: weight loss): Can You Lose Weight in Eating Disorder Recovery? I stand by my answer, because I am an advocate for body neutrality and body autonomy. If you want to change your body, you should be able to — but you should do it out of love, not hatred, for your body. Yet you should never, EVER try to lose weight when you are still in the throngs of an eating disorder.

The critical mistake I made when I went on my own “weight loss journey” was believing that I was “fully recovered” from my eating disorder. I recognize now that I existed in a state of partial recovery. I stopped actively dieting and obsessively exercising, and I was no longer borderline-underweight — but that didn’t mean that I had overcome the demons responsible for my eating disorder.

That state of partial recovery was what made it possible for me to relapse in my eating disorder recovery. Even though I now weigh over 20 lbs more than I did in my orthorexia/EDNOS days, I believe that I am still, in many ways, back where I started.

Why I Relapsed

Ever since I was misdiagnosed with IBS in 2018, I have been on some form of a “diet,” masquerading as self-righteous concern for my chronic illness symptoms. Once I found out I likely had endometriosis, not IBS, I was relieved to give up the low-FODMAP diet and eat whatever I wanted again. But as soon as I gave myself permission to eat whatever I wanted again, my doctor made a simple suggestion that I try going gluten-free for my endo.

That plunged me into a world of shoddy research and iffy recommendations from people without medical or nutritional certifications, telling me that I shouldn’t eat X, Y, or Z because it would promote inflammation. I don’t blame my doctor for it, especially because I don’t think she knew about my history of disordered eating, but I do blame myself for taking her suggestion and running away with it. I actively let it derail my recovery, because, in short, I was desperate. I was tired of feeling “sick,” and I thought that going gluten-free and dairy-free would help me do that.

I did feel better, for a little while — but recently, after my second day in a row experiencing extreme hunger, it became clear to me that I had traded one type of “sickness” for another. My restrictive diet helped my endo belly and my constipation, but it was destroying my mind. Now, I know two things for sure about my relationship with food as someone in recovery from chronic illness:

Firstly, chronic illness is a significant stressor. In my dialectical behavior therapy (DBT) intensive outpatient program (IOP) two Januaries ago, we learned about the importance of relapse prevention for mental illness. Part of relapse prevention is recognizing triggers (like stressful situations) that might lead you to relapse. But because my chronic illness was so all-consuming, between doctors’ appointments and late nights spent educating myself on endo, I forgot to slow down long enough to check in with myself and recognize the stress I was feeling. As a result, I underestimated the stress of having a chronic illness in my life. That’s how I failed to anticipate my relapse before it began. All I cared about was feeling better physically. I thought that managing my symptoms would alleviate my stress, but when I turned to diet to help me “recover” from endo, all I did was trade the lack of control I felt about my chronic illness in for a faulty sense of control in the form of restriction.

Secondly, the chronic illness community encourages restrictive dieting. The endo community online is an important part of my life. They are my supports, and I would not trade the friends I have made on Instagram and through this blog for anything. That being said, there are “influencers” in the endo community who gain money and followers from recommending restrictive diet plans (*cough cough THE ENDO DIET cough*). And the thing is, people with endometriosis are more vulnerable to falling prey to these diets than the average person. Why? Because we’re in pain, and we’re desperate. I was willing to do anything — even potentially compromise my eating disorder recovery — to feel less bloated, to have regular bowel movements, and to stop having pelvic pain. So, even though my surgeon back in Cleveland told me there was no scientific evidence that cutting out food groups could relieve endo symptoms, I let those “influencers” convince me that food was the problem…. when the real problem was, and is, the f**cking endometriotic tissue growing in my abdomen!

The Truth About Dieting and Chronic Illness

Now that I’ve learned the truth about diet and chronic illness — that it’s my illness’s fault, and not my diet’s, that I feel this way — I want to shout it from the rooftops so everyone knows it. For now, though, I guess I’ll settle for sharing on this blog 😉

But thanks to the wealth of misinformation about chronic illnesses and their management that’s out there, I’ve also learned a second important truth: diet-related chronic health conditions (DRCHCs) create a perfect storm for disordered eating. In fact, there is a really fascinating study you can check out that goes into this in more depth — but I’ll attempt to summarize the most important parts of it below.

Basically, the study identifies some key factors that make chronic illnesses a breeding ground for disordered eating habits, chronic dieting, and restriction:

  1. The role of weight in chronic illness. Chronic illnesses, and the medications used to treat them, are often associated with rapid fluctuations in weight, including both weight loss and weight gain. Either can be a trigger for disordered eating, in my experience. Weight loss can become addictive, leading you to compulsively pursue more and more of it — yet no matter how much weight you lose, you’re never satisfied. Weight gain, on the other hand, can trigger self-deprecating, fatphobic thoughts that make us feel “less than” for putting on a few pounds. I strongly feel that this contributed to my relapse. In January 2020, I started taking norethindrone acetate (a synthetic form of progesterone) to halt my periods. Little did I know that progesterone was associated with significant weight gain. I had already put on weight as my gut healed from IBS — which was a good thing, considering I was underweight at the time — but as a result, I found it even harder to cope with the extra 10-15 lbs I gained from the progesterone.
  2. The role of food in chronic illness management. “Let food be thy medicine, and medicine be thy food,” is an increasingly popular sentiment in modern medicine — and, as a result, in the chronic illness community. We’ve somehow gotten it into our heads that using medical technology or treatments to manage disease is “bad,” and using so-called natural treatments like dietary restriction or essential oils is “good.” (If you’ve ever had an ED, this type of language probably feels eerily familiar to you.) I feel this is especially prevalent in the reproductive health community, especially when it comes to conditions that primarily affect womxn — like endometriosis and polycystic ovarian syndrome (PCOS). Thanks to dangerous marketing messaging from influencers, womxn are constantly plugged into this diet culture-fueled fantasy that we can “cure” an incurable disease, like endo or PCOS, through diet…as long as we pay a ridiculous fee to be part of some program or protocol, of course. What’s more, some chronic illnesses — like IBS, for example, or celiac disease — require a preoccupation with food as a central part of treatment. When I was on the low FODMAP diet for IBS, I experienced the triggering effects of not being able to eat, well, anything firsthand. I can’t imagine what it would be like if I had something like celiac disease, where exposure to gluten-containing foods would be not only unpleasant but also potentially dangerous. When diet is so intricately tied to chronic illness management, obsession and preoccupation with food necessarily follow.
  3. The role of chronic illness in body image. It’s hard to love your body when your body is a constant source of pain and discomfort. When your body feels like the enemy, it’s nearly impossible to look in the mirror and love what you see. For me, what affected my body image most was my endo belly. Let’s be real here: it’s hard to feel beautiful or sexy when you can’t button your pants! Constipation, diarrhea, and the dreaded “endo belly” are symptoms I’ve faced nearly every day of my adult life. Even when I was underweight, I genuinely believed that my bloated belly was “fat” because it was full of air, full of endo, and severely inflamed. Gastrointestinal disorders or symptoms are a component of so many chronic diseases, yet we don’t normalize the diversity of body shapes that necessarily result from a bloated stomach. In a culture that emphasizes the importance of having a “flat tummy” and “busting belly bloat,” and where influencers like the Kardashians are making millions off promoting diet teas to help us smooth out our stomachs, it’s no wonder that having a disease that causes bloat takes such a toll on self-esteem.

Conclusion

There are so many problems with the way we talk about chronic illness, both in the medical system and within the chronic illness community, that contribute to the prevalence of disordered eating among people with chronic illnesses. For some reason, we’ve become preoccupied with treating people who “heal their bodies naturally” (!!!) with diet, exercise, essential oils, and acupuncture as the “gold standard” in chronic illness management. Unless we’re basically dying (or in so much pain that we wish we were dying), turning to modern medicine is seen as the coward’s way out.

I can’t tell you how many people I’ve spoken to online who have had similar experiences as me: they began a restrictive diet for their chronic illness that either caused an eating disorder relapse (in those of us with a history of ED) or triggered disordered eating behaviors for the first time (in those of us with no history of ED).

At the end of the day, I think so much of the problem has to do with blame. We’re desperate to explain the unexplainable — like why some of us get stuck with chronic illnesses and not others — so we devise these elaborate narratives in our minds to rectify the cognitive dissonance. As a result, both chronic illness patients and society as a whole put too much blame on the individual, as if we somehow “caused” our disease through a combination of weakness, laziness, and lack of willpower.

Thankfully, what I am finally beginning to understand is that the only thing to blame for my endometriosis is, well, the endometriosis growing in my belly. The problem was never food; it was endo. Now that I know that, I honestly feel I am closer than ever to conquering my eating disorder. This time, I’ve decided, I’m going to make a full recovery. I won’t stop halfway. This is going to be the one that sticks.

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