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.

Can You Lose Weight in Eating Disorder Recovery?

Trigger Warning: This post deals with weight loss, eating disorders, calorie counting and other topics that could be upsetting to someone with a history of an ED. Please proceed with caution. Remember, I am not a medical professional, so consult your doctor before making any changes to your diet or exercise routine.

It’s been awhile since I talked about eating disorder recovery, but with the emphasis on weight gain during quarantine in the media lately, I think this blog post is overdue. Although I titled this blog post “can you lose weight in eating disorder recovery?” I think the better question is “should you try to lose weight in eating disorder recovery?”

I’m turning 22 in July, which means I’ve officially been in eating disorder recovery for almost five years now. Those of you who know my story know I suffered from orthorexia / EDNOS on-and-off from ages 14 to 17. Since then, I’ve had relapses — especially when I was first diagnosed with IBS and began skipping meals to control my symptoms — including attempts to purge, but thanks to the help of a dietician at my alma mater, Boston University, and a long stint in an intensive outpatient program (IOP), I now have a healthier relationship with food than I have had in a long time.

As someone in eating disorder recovery, I’m no stranger to fluctuations in my weight. In high school, when I first began eating intuitively, I gained so much weight that my prom dress no longer fit. (Even though I’d taken the tags off, my mom took me to the store and helped me lie about receiving the gown as a gift so we could exchange it for a larger size.) But this year, I experienced weight gain in a different way than I ever had before.

I’m going to mention some numbers here, so if you’re triggered by that specifically, I recommend you skip this paragraph! I believe in set-point theory, and my set point weight has always been 115 to 120 pounds. However, this year, I started taking progesterone to help with my suspected endometriosis and soon found myself gaining almost 15 pounds in a matter of months. Weighing in at 132 pounds, I was three pounds away from being classified as “overweight” for my height — not to mention, I’ve spent hundreds of dollars replacing clothes that no longer fit, and coping with the blow that’s inflicted on my self-esteem.

I believe in Health at Every Size (HAES) and that weight gain is natural at certain points in our lives, especially when it’s a result of age or a side effect of a medical condition or treatment. I’m even okay living in my larger body (though I do miss some of my clothes that no longer fit), especially given that it means freedom from debilitating cramps. Nor do I believe that food should ever, ever be about guilt. But to me, becoming almost overweight served as an important sign that I should pay more attention to the way I am treating my body.

For me, that raised an important question: is losing weight in a quest for better health going to trigger a relapse? Here’s what my experience has been and what I’ve learned from doing some research on the subject.

You Need to Be Fully Recovered.

Do you consider yourself fully recovered from your eating disorder? To me, this is a tricky question. I’ve been in eating disorder recovery five years and I think some part of me will always struggle with the urges to restrict and purge. Yet at the same time, I’ve also achieved a milestone in my recovery where I can look at the scale objectively. Gaining weight isn’t a measure of whether I am a good or bad person, nor is it a death sentence. It’s just a number.

Viewing my weight as just a number allows me to weigh myself and track my weight without my daily mood being tied to what I see. I still struggle with the urge to weigh myself more often than I probably need to, but with the exception of the occasional bad day, my weight no longer has such immense power over me. To me, this is what it means to be “fully recovered.” The worst of my EDNOS days feel so far behind me that I feel comfortable pursuing a small amount of weight loss for the sake of improving my diet and exercise routines.

If you are new to recovery or not fully weight-restored, then weight loss should be the last thing on your mind right now. Whether or not you are overweight or obese (because no, “skinny” people aren’t the only ones who get eating disorders), your main focus should be on maintaining healthy eating patterns and overcoming your ED thoughts and behaviors. Methods used to lose weight, even in a “healthy” way — i.e. weighing oneself or tracking calories consumed and burned — can lead to a relapse if you are not firmly set in your eating disorder recovery.

You also need to be honest with yourself about your reasons for wanting to lose weight. Wanting to fit into your favorite pair of jeans because you miss wearing them? Wholesome reason to lose weight. Believing that weight loss will make you happier and fix your life’s problems? Insidious eating disorder urge. When you have not been in recovery very long, you may not be able to tell the difference between these two types of thoughts, which I like to call your “eating disorder self” and your “genuine self.”

That’s why it’s imperative that you consult your treatment team, and potentially seek the support of a nutrition and/or mental health professional, if you want to lose weight in eating disorder recovery. They may be able to better grasp whether or not your reasons for wanting to lose weight reflect a healthy self-esteem or stem from your eating disorder.

You Need a HAES Approach.

In my humble opinion, if you’re going to pursue weight loss as a person in eating disorder recovery, losing weight should be your secondary goal. You need a primary goal to drive your behavior that doesn’t stem from a place of self-loathing or food policing. For me, that goal is wanting to improve my food and exercise habits and wear my favorite clothes again. Losing weight is simply a side effect of that larger, overarching goal.

Weight loss on its own will not help you achieve health, happiness or even body satisfaction. In my experience, if you want to lose weight for the sake of losing weight, it’s more likely to come from a place of insecurity and self-judgment than from a place of holistic health and self-love. But that’s not the only reason why I feel that weight loss should not be your primary goal. As a person in eating disorder recovery, I also firmly believe in the HAES movement, which tells us that weight is not, in fact, a true measure of health or wellness.

Conventional doctors read the number on the scale, classify patients into categories based on our BMI (such as “overweight” or “obese”) and make suggestions about how much weight to lose accordingly. Their sole goal is to force you to fit neatly into the “normal weight” box, because that’s all many doctors are taught in medical school: maintaining a normal weight helps minimize health risks. I would know, because I helped my doctor boyfriend study for all his board exams!

But as I’ve learned in my eating disorder recovery, correlation does not equal causation; being overweight does not directly lead to death or disease. And I’m not even going to get into the unethical relationships between the diet industry and the so-called pioneers of studies that promote the false idea of the “obesity epidemic.” All I’ll say is that doctors shouldn’t look at a patient’s weight or appearance to make final judgments on their health status. Better measures of health include blood pressure, fasting blood sugar, cholesterol and other biomarkers that tell us what’s actually going on inside our bodies.

That being said, I think it’s important to consider all perspectives, without engaging in fear-mongering. We can and should be able to appreciate fat bodies and end weight discrimination while still promoting a healthy population. At the same time, one would argue that when eating healthfully and exercising, a person is unlikely to remain morbidly obese, regardless of whether weight loss was an actual goal of theirs. Currently, the empirical research does seem to suggest that weight loss in obese populations reduces disease risk and mortality rates (though admittedly, many of these studies are sponsored by companies promoting weight loss drugs or boasting other links to the dieting industry). HAES healthcare providers recognize this, and have identified the need for more quantitative studies to support their work.

Personally, I believe in the importance of physical and psychological health, which is why I support HAES over the lose-weight-at-all-costs approach triggered by obesity alarmists. Initial studies have found that people who are satisfied with their weight are healthier both mentally and physically — which is a pretty great start if you ask me. So, how do you follow a HAES approach to nutrition? According to HAES and intuitive eating, the most important thing is that we avoid fad dieting (which has been shown to fail 95 percent of the time) and focus on foods that make us feel good. You can lose weight with an HAES approach, as long as you love yourself the same whether you weigh 400 pounds or 150 pounds and avoid unsustainable patterns of eating. Linda Bacon and Michael Pollan, founders of the HAES movement, outline the following guidelines for following a healthy diet with an HAES approach:

  • Enjoyment should take first priority. Don’t force superfoods into your diet if you hate eating them — nor should you force yourself to indulge in something you don’t really want for the sake of “proving” your eating disorder recovery. I also interpret this to mean that you should pay attention to the way foods make you feel in addition to the way they taste. For example, I love macaroni and cheese and will always have days when I choose to eat it — but most of the time, I avoid dairy because the satisfaction of cheese doesn’t outweigh the physical side effects of my lactose intolerance.
  • Variety is the best way to ensure you are getting all the macro- and micronutrients your body needs to stay healthy. Pay attention to building a colorful plate, as bright colors signify the presence of different vitamins and minerals.
  • Plant-based foods should be the centerpiece of your diet. That doesn’t mean you have to follow a prescriptive diet, such as vegetarianism or veganism, but meat and dairy should be considered side dishes.
  • Not too much means grasping your hunger cues and only eating until you are comfortably full. You should avoid distractions while eating (though I’ll be the first to admit that I’m frequently guilty of snacking and scrolling!) and distinguish between physical and emotional hunger.
  • Most of the time is the final tenet of the HAES approach to food. In short, it means that there are no hard-and-fast food rules. You should strive to follow the healthful approach described above whenever you can, but also accept that sh*t happens! Some days, you’re only going to have time to eat a granola bar while driving on your way to picking up the kids, meaning you’re going to need to eat while distracted. Other days (like Thanksgiving, for one), you might choose to eat beyond full because you love what you’re eating. AND THAT’S OKAY! It’s about moderating, not avoiding, your consumption of processed and so-called “unhealthy” foods. As Linda Bacon says, “there’s plenty of room for Twinkies in the context of an overall nutritious diet.”

To bring this discussion to a close, because I know it’s been a long one, weight loss isn’t your primary goal when following a HAES approach. But, you may find that when you begin to focus on eating plant-based foods, following your body’s hunger cues and enjoying treats in moderation, your body settles in at a set point weight that’s lower than you thought it would be. That doesn’t mean you should view HAES or intuitive eating as a “diet,” per se. However, if you’re someone who’s been stuck on the yo-yo dieting rollercoaster for years and struggles to lose weight, you’ll likely have more luck achieving your weight loss goals while following a truly satisfying intuitive eating approach than a strict fad diet.

You Need Support.

The first thing I did when I decided to lose a few pounds? Tell David. Our conversation went a little something like this….

HALEY: Hey, can I talk to you about something?

DAVID: Sure.

HALEY: So, I’ve been dissatisfied with the weight I’ve gained on my medication because a lot of my clothes aren’t fitting and I’ve decided to try to lose a few pounds. I’m going to be tracking my weight and calories to help me out. I’m telling you this because of my history of disordered eating, so that if this triggers my old habits, you can knock some sense into me.

DAVID: Okay. Thank you for telling me that. I will be sure to let you know if I notice anything.

If you have a history of an eating disorder, you cannot and should not go about weight loss on your own. You need the support of your medical team, as well as your friends and family, to keep you on track and prevent you from relapsing during your journey to lose weight. Alternatively, if your weight loss is something you feel the need to conceal from others, that might be your first cue that it’s coming from a place of disordered thinking, rather than a genuine concern for your health and well-being. You shouldn’t need to hide your goals if you are truly acting from a place of self-compassion.

It’s absolutely essential to be open and honest about any disordered feelings or thoughts that arise during your weight loss journey, and to be prepared to abandon your goal in the event that this pursuit leads to a relapse. Having the support of a registered dietitian and/or mental healthcare provider can provide you with an outlet to discuss your relationship with food and addresss any disordered thoughts or behaviors you’re still struggling with. If you’re not comfortable with this approach to weight loss, that’s a clear sign that your weight loss may not be coming from a healthy place and that you should wait until you are further along in your recovery journey to reassess whether losing weight is the right move for you.

I’ve also found it incredibly important to support myself by monitoring the types of content I’m taking in online. Despite my goal to lose a few pounds, I’m not following fitness influencers or searching for “flat belly tips” on Pinterest, because I know thsoe are things that trigger me. Instead, I’ve been watching a lot of videos by the dietitian Abbey Sharp on YouTube, where she criticizes fitness influencers’ “What I Eat in a Day ” videos for both nutrition content and any disordered eating patterns she notices, and searching for recipes that follow the plant-based, DASH diet or Mediterranean diet approaches, which emphasize overall nutrition and heart health over weight loss.