Coping | Disability | Food/Diet | IBD
I was recently diagnosed with an eating disorder. After a double balloon enteroscopy confirmed in December that my Crohn’s is in remission, I realized that the eating patterns I had rationalized as “necessary because of my Crohn’s” didn’t actually make sense, and that I might have a problem.
I’m not exactly sure when my eating disorder began. Looking back, I had disordered eating even before Crohn’s, thanks to 20+ years of OCD, and my Crohn’s just blew up the situation. When you have OCD that creates rigid food rules and eating patterns, it’s hard to know where OCD ends and the eating disorder begins. When you have GI illnesses that necessitate some level of restrictive eating, it’s hard to know where the medically necessary restrictive diet ends and the eating disorder begins. I don’t know if finding the exact point where I crossed the line is possible. All I know for sure is that I crossed the line at some point, and now I’m trying to find my way back.
I wasn’t going to talk about this. Even now, as I’m writing this, I’m not sure if this blog will ever make it out of draft form. Throughout this process, I initially told one of my providers, “If I have an eating disorder, I don’t want to know. There are enough things wrong with me already. I can’t accept anything else.” And then, when I couldn’t deny reality anymore, “Well, if the dietician does think I have an eating disorder, I’m never going to tell anyone outside of my providers.” And then, when the diagnosis was confirmed, “Well, I’m never going to tell anyone besides my closest friends and eventually my parents.” I was determined to keep this diagnosis a secret from as many people as possible.
In my process of finding my way back to adequately nourishing my body, I’ve tried to figure out what makes me so ashamed and embarrassed about my eating disorder. I’ve been a blogger for Girls With Guts for over a year now, everyone I know knows I have Crohn’s and OCD, and I’ve publically written about bloody diarrhea, colonoscopies, stool collection labs, and all sorts of other shit society labels firmly in the “embarrassing” category. What makes my eating disorder so different?
I don’t know exactly, but I think part of it is the fact that this feels like my fault, in a way that my IBD, OCD, fibromyalgia, and other illnesses don’t. After a close friend recovered from a severe eating disorder when we were growing up, I learned a lot about eating disorders, warning signs, and prevention. I thought that, if I learned everything there was to know about eating disorders, I could prevent them from ever harming anyone else I loved, including myself. I thought that if I pretended to love my body as part of “Positive Body Image” campaigns, I could make it so. What I failed to learn, and continually have to remind myself, is that an eating disorder is never a choice. You can’t just decide not to have an eating disorder, no matter how hard you try, especially when life delivers the perfect circumstances to create one.*
For me, the “perfect circumstances” were a tale many IBD’ers are familiar with. I started losing weight out of nowhere, I got diagnosed with IBD, I unintentionally lost a large percentage of my body weight, and suddenly found myself at an apparently “ideal” weight in the eyes of our fatphobic, weight-obsessed society. The compliments rolled in, despite my pleas for them not to, and everyone had something to say about my rapid weight loss. Add in 2 years of steroids and prednisone-induced adrenal insufficiency (which causes weight loss and weight redistribution), plus a terror of food and a deep mistrust of this unpredictable, unrecognizable body I was trapped in, and poof. Enter, Eating Disorder!
My eating disorder convinced me that the way to regain control of my body was to make sure my weight didn’t change again. In my mind, the idea of gaining back weight and returning to my pre-Crohn’s size (or to some other, unknown size) made me feel just as terrified and out of control as unintentionally losing weight had in the first place.
On top of this, my OCD often latches on to every twinge of GI discomfort in my bowel and suddenly shouts, “ALERT! ALERT! Is this a Crohn’s symptom? Is it coming back? Maybe you’re not in remission? You don’t have many medication options left! Prednisone destroyed your adrenal glands for 10 months! You had so much pain! We can’t go back!! We won’t survive another flare!! ALERT! Don’t eat anything!! Your bowel can’t handle it!” These terrifying alerts from my OCD led me to restrict my diet to mostly Ensure and bland foods. Until my balloon enteroscopy confirmed that I was in remission, I stuck to a very limited diet, convinced that was what my gut needed to keep the Crohn’s from getting worse.
Ironically, my GI symptoms have actually improved a bit now that I am eating more variety and calories each day. The eating patterns that I thought were protecting me were actually hurting my overall health and causing malnutrition. Expanding my diet has brought more stability to my body and freedom to my life, even if letting go of behaviors that made me feel safer has been hard.
Reintroducing foods that I’m terrified of is still petrifying. Gaining weight without trying to stop it feels scary and socially unacceptable. Being chronically ill with an eating disorder poses unique challenges that non-chronically ill people with eating disorders don’t experience (this might be a whole blog of its own someday), and it’s really hard to make peace with a body that has put me through as much hell as my body has. The knowledge that I could do the hard work of eating disorder recovery, only to have another Crohn’s flare and get really sick again, is enough for me to freeze with fear sometimes.
And yet, I’ve reached the point where struggling through eating disorder recovery makes more sense than continuing to struggle through life with my eating disorder in charge. It’s true that my Crohn’s remission probably won’t last forever, and I don’t know if I will ever feel the sense of safety and control I had in my body before Crohn’s. But I could spend my time in remission depriving my body of the nourishment it needs, ensuring that my next flare is worse, or I could spend my time in remission working towards enjoying food and nourishing my body completely for the first time in years.
Making the choice one day, one meal at a time to defy my eating disorder, my OCD, and societal pressures to “eat less” and “keep the weight off!” can be daunting–especially when I am already exhausted from fighting Crohn’s–but it is the necessary work of survival.
*Learning about eating disorders as a result of my friend’s experience couldn’t prevent my eating disorder completely. But that learning did give me the tools to identify warning signs in myself, as well as the courage and confidence to seek diagnosis and treatment.
***If you are concerned for yourself, or just want to learn more about eating disorders, you can visit the National Eating Disorder Association (NEDA) webpage or call their helpline at 800-931-2237.***