Why Accepting I Still Struggle With My Eating Disorder Isn't the Same as It Defining Me

Editor’s note: If you live with an eating disorder, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “NEDA” to 741-741.

I was first diagnosed with an eating disorder at age 16, just over 10 years ago. Since then, I’ve bounced in and out of a local eating disorder clinic — one brief stint of inpatient, a couple stints of day programming, a couple rounds of “intensive outpatient” treatment and a lot of appointments with therapists, doctors and nutritionists. It’s far from my second home, but I’ve certainly been around enough to recognize faces.

There’s a crowd of “repeat offenders” at every ED clinic. They’re the people I thought I would absolutely never be the first time I walked through the door. Then, somehow, over time, they became oddly familiar, discomfortingly relatable to me. It’s a disconcerting reminder to me that people do actually die from eating disorders.

In the past two years, I’ve heard about three fellow patients passing away. One, the one who hit me by far the hardest, was my roommate during my week-long inpatient stint the spring of my college freshman year. She was middle-aged then, and simultaneously terrifying and fascinating to me. She was also incredibly kind. Meeting her when I was admitted made me realize there is such a thing as a “veteran” in the world of eating disorders. I still feel some lingering guilt over the blatant judgment and terror I felt (and God knows showed) when she was introduced as my roommate.

But as that week wore on — and it certainly goes down as one of the longest weeks I’ve experienced — I realized I related to her more strongly than many of the other patients I was surrounded by, many of whom on paper I had a lot more in common with. She was truly lonely. She was independent, obstinate, entirely capable and completely her worst enemy. And probably most striking to me, at peace with who she was.

When I hear about these deaths of individuals that exist in a strangely wide periphery of my life, it leaves me more unsettled than anything. On the one hand, I feel like I don’t deserve to feel any deep empathy, because that is not my life. My life is certainly impacted by anorexia and bulimia, but it’s not dominated. All things told, I function well in this world, my rigidity does know bounds, and for all the roadblocks and curveballs it’s presented, my ED has not kept me from building the kind of life I want. On the other hand, I’m not convinced of my own will to change. Like I believe my roommate felt, sometimes I am far too accepting of ED as reality.

I’ve heard many times, and especially at the clinic, that my eating disorder is not me. But I’ve never been able to buy in to viewing it as an entity separate from myself. I mean, we’re not talking invasive cells or nasty bacteria here, we’re talking about my own thoughts. Yes, I know that there’s the inherent brain-wiring argument, and I believe that — but it’s still my brain, and all of the intricate circuits that combine to make me who I am. There’s no intruder in my mind. I am me, making both the good and bad choices, playing off of my own circumstance and luck to make the life I lead.

I’m not going to drop dead tomorrow— of that, I’m fairly confident. But during the weeks that have been bad, the days when I feel three steps beyond fatigued, the moments when my heart pounds in a foreign way, when I make that second trip to the gym for no real reason, when the idea of something as simple as making dinner sounds completely intimidating, that’s when I start to worry I’ll make that list of casualties. I hold on to how different life feels today than it did eight years ago when I was admitted to the inpatient ward, or a few years ago when I was struggling to get through college or even just a year ago when I was unsure I could live on my own. I’ve faced down a lot of challenges and come out the other side. I do accept my eating disorder as a reality, and something that will never stop influencing me. But it doesn’t have to determine me, and it doesn’t have to be static. I may be chronic, but I don’t have to be damned.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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Thinkstock photo via Rively