Less Ed, More Self-Awareness

You’re going to die. 

More than one person told me that early in my recovery. In honor of Eating Disorders Awareness Week, I’d like to talk a little more about that. To do so, I’d like to pivot from talking so much about me and talk about You. 

I’ve been writing about myself and talking about my disorder since before it became a disorder. Long before a formal diagnosis, my journals were filled with weight loss goals and dreams of a body different from mine. More than once, I wished for anorexia. My disorder, for most of my childhood, was just a bud waiting to be watered. I think that it was watered by You. You, who believes weight loss is morally superior to weight gain. You, who led my exercise class and drilled into me that I had to earn meals. You, who monitored my BMI as a child and threatened obesity. You, who wrote the article and the headline, Should Patients Be Allowed to Die From Anorexia? 

The New York Times published this lengthy, salaciously-titled article in early January, and it’s what has me asking everyone to look inward for awareness, not at me and others with eating disorders. The central question of the article is whether or not palliative care is ethical and appropriate for a person with anorexia nervosa who no longer wishes to participate in treatment for their disorder. Doctors on both sides of the argument weigh in, as well as the woman at the center of the story, Naomi. There are gory details about her disorder. Psychiatrists in favor of palliative care highlight the suffering of repeated treatment attempts, cycling through the same nutritional rehabilitation and psychiatric evaluations, often with the same practitioners. They propose a new diagnosis of terminal anorexia for “the small fraction of patients for whom ‘recovery remains elusive.’” Those opposed argue that Naomi and others with anorexia nervosa aren’t in their right minds to decide on death. They believe that the idea of treatment being futile is a pathological result of minds starved of reason. They wonder if terminal anorexia might even become the goal for such minds.

I’m not interested in debating palliative care for anorexia nervosa. I believe treatment—in my experience—is often grueling and outdated and traumatic. I have been in a place where I would rather have died than continue recovering that way. My empathy for Naomi is immense. I also believe that those suffering with eating disorders are perfectly “reasonable.” We arguably pay more attention and try to accommodate the patterns and rules of society at large more than anyone, which leads me to my request for Your critical self-evaluation. There’s a crucial part of any holistic conversation about healing from eating disorders missing from the NYT article. What about the culture which holds me and Naomi in and outside of treatment? What about You? 

The more essential and urgent question facing those of us with anorexia nervosa is not should we be “allowed” to die from our illness, but why might some of us be driven to consider death in the first place? The article touches on the inadequacies of treatment, and that’s important, but that’s not the whole story. Our illnesses are the result of complex genetic, neurological, psychological, and sociological factors, meaning that parts of our disorder were given to us by biology and other parts are influenced by those around us. Our environment—You—play a role in the development of our illness and therefore have significance to our recovery. Being alive in or out of treatment feels like a landmine of triggers, like we cannot escape the very diet-obsessed and anti-fat ideas that we're trying to heal from. It often feels as though there are few safe places to land. 

You don’t have much room.

Whether we’ve considered death or not, we’re reminded in treatment that it will come for us. Anorexia nervosa is the deadliest—or second deadliest, depending on the source—psychiatric illness, they tell us. Yet, the reality is that the thing we often need to do to recover and not die—gain weight—poses a very real threat to the societal agreement that weight gain is bad. Only 6% of people diagnosed with eating disorders fall into the “underweight” category, meaning that most of us begin recovery in bodies deemed “normal,” “overweight,” or “obese.” These labels themselves are a product of the debunked BMI metric, and Your acceptance and evangelism of these labels plays a role in watering the buds of our mental illness. Within Your metrics, weight gain threatens to throw our bodies into a category that goes against what You’ve determined to be healthy, and in some cases into a category riddled with its own death threats. How are we to choose which death? We drown in the impossibility of all of the expectations.   

Our diets suffer from the similarly overwhelming narratives. Ideas about food morality are not original to eating disorders—sugar is bad, green is good, junk food is junk, whole foods make us whole, and so on. Our disorders have accumulated the data and calculated severe and inflexible rules about how to feed ourselves. Every article that attempts to vilify eggs or butter or fruit faces counter arguments defending them. These conflicts only work to minimize the safety of eating, and to us, they can be devastating. They are more water on the buds of our disorders, because we believe all of You. In treatment, doctors work to stabilize our bodies then build meal plans that both challenge and accommodate our food rules with the express goal of restoring health. Our disorders are not about food, they say, and yet we must eat food to heal. At the very least, we must eat to not die. Once outside of the hospital, strangers, ads on the street, influencers on our phones will be there to remind us of the rules and how we’re breaking them. 

You don’t look like you have an eating disorder. 

But I’ve seen you eat. 

Yeah, I’d like to lose some weight too. 

You, as an individual psychiatrist or friend or celebrity or brand, cannot and should not hold all of the responsibility; it’s far more complicated than that. There is a biological and genetic reality to my disorder that I couldn’t change if I wanted to. And yet, our collective agreement to label certain foods as junk, certain bodies as “obese” and dangerous, and other bodies as ideal and beautiful makes recovery elusive. Our Ozempic jokes, cheat days, and tips and tricks for managing our gut biomes make it feel impossible to find safe space. Our acceptance of a predetermined correct body—one designed to uphold white supremacist, patriarchal ideals of petite and demure femininity and strong and dominant masculinity—makes it easy to imagine more eating disorders. No one individual made these cultural agreements, and no one individual will get us out, however I do believe that if more of us approached our ideas about bodies and food with more curiosity, more questions than blind acceptance, those of us with eating disorders would have more room to recover, to heal, to build new relationships with ourselves. 

  Lately, I worry that stories like mine and Naomi’s—as important and often therapeutic as they are—allow You to feel separate from us. Maybe You haven’t memorized the calories and macros for all of your meals. Maybe You have never considered puking up your brownies. Maybe You’ve never bleached your eyeballs like Naomi because you could no longer stand the idea of looking at yourself in the mirror. But I believe You likely do have a lot of ideas of what it means to have a body, how to feed it, how to treat it, how to manipulate it. I believe You’ve communicated those ideas out loud to others. I believe You may have unintentionally or otherwise watered the buds of eating disorders. Those of us with mental illness take the agreed upon rules to their edges. We’re debilitated with shame when we feel like we’re breaking those rules. We push ourselves into dangerous, isolating places, and our bodies become ravished physically and mentally by the obsessions. We are the ones being most obviously punished by the dangerous narratives of diet culture, but we are no more responsible for being critical of the root of our ideologies than anyone else. We found ways—however self-destructive—to try to accommodate Your expectations, and now You’re wondering if we simply prefer to die.  

You have to admit…[your eating disorder] is hilarious.

Ha, yeah, we all wish we couldn’t look (in response to a request to step on a scale). backwards 

I think we all want to be healthy.

The truth is that we never got to express our preference before we were suffocated by the weight of a diet-obsessed and fatphobic society. As we fell into self-harm and compulsive behaviors, many—if not all—of us received feedback on our disorders. The comments I share throughout this essay didn’t come from folks with eating disorders, and they were and are not rare. I don’t have time to write out all of the harmful responses I’ve received over the last fifteen years. Some of You thought I must be wise because I’d achieved a level of thinness that attracted attention. Others thought I didn’t look thin enough to be sick. Nurses—practitioners of health—shared my desire to avoid weight entirely because the number on the scale held such power over them. Your responses are heavy with Your biases toward bodies, how we feed them, the correct ways to do both. Your responses to our disorders are working against us and making it feel impossible to recover. 

If You want to participate in conversations about terminal mental illness and ethical approaches to care for those of us with eating disorders, You must address the context in which we are trying to heal. We are surrounded on all sides by fear-stoking, mind-bending advice for how best to feed and have a body—and none of them center actually checking in with our bodies. I’ve followed the winding paths of each of my food and body rules to their roots, and they are not original ideas. The disorder may be part of my genetic make-up, but the stories are not. So, the awareness I would like to ask for this year is not about statistics and facts about me and others with eating disorders. It’s within You. You, at the New York Times. You, who thinks some foods are “worth” the calories and some aren’t. You, who thinks exercise gives You permission to eat differently than You otherwise would. You are not a villain for having these ideas, and yet, You do have a responsibility to ask where these ideas come from, why they exist, who they benefit, and who they destroy. 

I can’t speak for Naomi and others in palliative care for anorexia nervosa. But I can say as someone who has suffered with the same disorder that, at one time, death appeared to be the relief I desperately needed. Attempts to frame our death as either the most humane finale or an unreasonable request miss the point of it all. Death felt like the only safe place away from the noise both in my own brain and outside of it. Little can be done about my genetic composition, but what of the culture? What of the noise coming from You? I’m lucky that the folks in my life took my disorder as an invitation to look at the way they contributed to the harmful narratives around food and bodies that became my self-harm. I know that has not been easy. Their self-awareness, however, I believe has a direct affect on my ability to sustain recovery and continue healing. I believe more of Yours could do the same.