We Need A Harm Reductionist Approach to Eating Disorders

People who don’t wish to ‘recover’ still deserve autonomy and care.

Photo by Louis Hansel on Unsplash

This piece was originally published to Medium on December 15, 2022. Why I’m migrating my archive to Substack.

I just finished reading the book Saving Our Own Lives by Shira Hassan last week, and it stands out to me as the first book I’ve ever read that applies a harm reduction framework to eating disordered behaviors. The conversation with Gloria Lucas included in the book discusses this subject, and what it looks like in practice the most thoroughly, but since I’d never heard it discussed before, I was alight with excitement and curiosity the moment Hassan brought the topic up within the book’s first few pages.

Harm reduction, for those unfamiliar, is an approach to public health issues that prioritizes body autonomy over forcing a person to meet external standard of ‘healthiness’ or moral correctness. Harm reduction holds that society has a responsibility to care for all people, no matter their choices, behaviors, or desires. It views individuals as the sole authority on what happens to their own bodies — and it acknowledges that trying to force an outcome or behavior change on a person who doesn’t want it is not only destined to fail, it’s a violation of their consent and dignity.

Rather than judging people for their choices, or attempting to shape their behavior from the outside using manipulation, coercion, shaming, or punishment, a harm reductionist accepts people as they currently are, and aims to help them meet their needs, on their terms.

Rather than trying to “rescue” a person from engaging in survival sex work, for instance, a harm reductionist asks a sex worker directly what it is that she needs. Condoms? Regular STI tests? Free childcare while she works? Would stable access to food and housing allow her to be more choosy about her tricks? Or does she just want a quiet place to charge her phone for a few minutes and to be left the hell alone?

Most nonprofit health clinics and shelters see themselves as providing services to the “needy” without showing respect for them as full people. Care providers at such organizations often presume to know what is good for a sex worker better than she knows herself. Such organizations may even refuse to give a client the benefits she does desire unless she promises to stay sober and off the streets. A harm reductionist, in contrast, follows the woman’s lead, and works with her (if she desires that support), and not “on” her.

How Nonprofits Stifle Meaningful Change, and Why

A review & discussion of the book The Revolution Will Not Be Funded

devonprice.medium.com

Harm reductionists are perhaps most well-known for distributing clean needles and overdose kits to people who use intravenous drugs. But a harm reduction approach can be applied to nearly any health-related behavior that’s been pathologized: drinking, drug use, sex work, living with an abuser, self-harming, gambling, and even attempting suicide. Yet Shira Hassan’s book is the first one where I’ve seen eating disordered behaviors discussed from a liberatory harm reduction perspective.

From a harm reduction point of view, making a full recovery from ‘illness’ and into ‘wellness’ isn’t always necessary. True harm reduction doesn’t force an illness label onto others from the outside at all, never deeming someone an addict, a victim, or eating disordered if they don’t see themselves that way. The harm reduction perspective affirms that the lives of people who have no desire to change their behavior matter just as much as those who have scrubbed all societally frowned-upon habits from their lives. Harm reduction doesn’t demand regret. It doesn’t expect trust. It simply extends respect.

This book was a timely discovery for me — I’ve been reflecting a lot on my old ED behaviors of late, and pondering the ways in which my dysfunctional relationship to exercise and eating weren’t actually entirely dysfunctional. Even when my health was at its worst and my ED was at it’s most all-consuming, my compulsive restriction & purging behaviors met a psychological need. Understanding that need with curiosity rather than judgement has served me far better than chasing after perfect “recovery” ever could.

My eating disorder has always been a tenacious shapeshifter. As soon as I remedy one particularly troubling symptom, a new one foams up and fills its old place. In high school, I burned calories by playing Dance Dance Revolution for hours on exercise mode. This pivoted to an avid biking habit in college, followed by long, ponderous walks in graduate school. Years of intense restriction morphed into harsh rules about when I could eat and what would be allowed past my lips.

Though each of these shifts initially looked to me like ‘recovery’, they did nothing to fix the rules-obsession and capacity for self-loathing that lurked behind on all my disordered actions. Every time my newest “healthy balanced lifestyle” spiraled into an addiction that claimed hours out of my day and all my available brain space, I felt like a sucker. I had failed to get better yet again. But I could not really focus on eradicating my “sickness,” yet, because many parts of me did not wish to change. I was getting something out of being ill, so much so that sickness felt like health.

Nearly every available piece of writing or scholarship on the subject of eating disorders assumes that the goal of full recovery should be imposed on the sufferer, whether they like it or not. This abstinence-based outlook does not make any sense, given that EDs touch so many of the actions and choices humans engage in on a daily basis. Expecting a person to recover from all their eating disordered behaviors at once is a bit like asking a depressed person to never report another negative thought.

An Eating disorder influences a person’s daily schedule, where and how they grocery shop, the modes of transportation they use, how they spend their break time at work, whom they socialize with, what they wear, the websites they visit, how they budget their paycheck, and how they self-identify. Eating disordered logic and rituals can touch nearly every facet of waking existence, from the bed to the desk to the bath.

What’s more, any significant move toward eating disorder recovery can shake loose new forms of unwellness. Refeeding yourself throws your toileting habits into a tailspin. Gaining weight forces you to go clothes shopping, which can set off all kinds of self-hating thoughts and compulsions. Spending money on psychological treatment can eat into your food budget, triggering a scarcity mentality at the absolute worst possible time. You can’t get well all at once, even if you want to. Instead you have to pick the forms of illness you can endure the best.

This is even more true when we account for the fact that many eating disorder sufferers do not wish to recover, because their behaviors serve many purposes. Before reading Hassan’s book, I’d been in the process of slowly realizing that my excessive exercise habits provided me with an excellent Autistic stim. Playing DDR for hours every night provided my body with necessary sensory input, and drained anxious energy from me, allowing me to sleep. Later on, taking long walks provided a satisfying way for me to zone out and escape other people when I was feeling overwhelmed.

My almost-religious adherence to a daily walking schedule was eating disordered, of that I have no doubt. But it also lent a structure to my day and got me out of the house. And my exercise habits & eating restrictions were one of the few areas in my life where I always felt comfortable stating my needs and telling other people no. No matter how passive or dissociated I was feeling, I always had the courage to reject foods I didn’t want to eat, and the assertiveness to claim the free time I needed for hours upon hours of exercise. In this sense, my illness was actually liberating and empowering.

I’ve come to realize that I have a very obsessive, ruminative mind that chases after problems like a heat-seeking missile. I need something to worry about, or my mind will produce almost delusional worst-possible interpretations of the data around me organically. At least my eating disordered fixations were rooted in a reality that was measurable and capable of being addressed. If I walked enough miles in a day, I could briefly rest easy, knowing I was an accomplished person. For my more vague feelings of unlovability I had no concrete solution.

Eating disorders are one of the most deadly mental health diagnoses around, so I don’t say any of this lightly. But for me, fixating on calories eaten and miles walked was dangerous, yet hurt me less than some of the other thought patterns I would have otherwise engaged in. It was also during my long, ponderous walking sessions that I first became comfortable dwelling inside my own consciousness. That eventually led me to become the social observer and writer I am today.

According to an abstinence-only view of eating disorders, I’m not allowed to acknowledge the positive role my ED played in my life. But my needs for physical stimulation, and time alone, and a means for expressing my boundaries were always gonna be there. I was always gonna find some way to burn off hours of stress and disengage from other people, no matter what.

Every time I made a stab at ‘recovery’ my eating disorder symptoms took on a new form, it’s true — but they always became less physically destructive while still scratching the psychological itch. I moved from hours of aerobic exercise to hours of walking, and then I stopped exercising altogether for a while and just forced myself to use a standing desk. I went from trying not to eat at all, to only avoiding certain foods, and then to making sure I ate enough to have energy for my weight lifting bouts. My ability to monitor and regulate my body size diminished when my gender identity and sense of fashion changed.

These aren’t the marks of a success from a Puritanical, recovery-only perspective. But they were shifts for the better, and I made them on my own terms. Because of this, they were far more lasting than any changes a doctor or loved one ever could’ve foisted on me.

Using a standing desk for eight hours per day did damage to my right knee. But it was far better than the starvation and over-exercise I’d been doing before. It didn’t distract from my professional and creative life the way setting aside three hours per day for walking used to do. And walking itself had been a lot better than doing so much high-impact training that I lost my period and kept passing out in class. Instead of feeling ashamed of myself for “backsliding” in my recovery and resorted to such methods, I can be proud for finding less-damaging way of meeting my needs — ones that actually had a few side benefits.

I have not seen many people talking about EDs from a harm reduction point of view, and I think it is desperately needed. Online, all eating disorder sufferers see is a lot of well intentioned encouragement that assumes what we ought to want. But where do you turn if you’re still active in your eating disorder and not committed to full recovery? The toxicity of the pro-anorexia and pro-bulimia sites is the only place left for you to turn, which makes matters so much worse.

We need to develop the eating disorder equivalent of needle exchange spaces for people who use intravenous drugs. I want to see spaces where eating disordered people can discuss strategies for mitigating the harm of their ED without being admonished for not wanting recovery yet, or ever. I don’t ever want to see a person institutionalized and their body controlled without their prior consent, even if it’s in the name of helping them find healing. If an eating disorder sufferer already has a fractured relationship to their body and their needs, no good can come from locking them up against their will and shoving a feeding tube down their throat.

I’m very happy to be all-but ‘recovered’ from my eating disorder these days. I have all the behavioral and physiological markers of a person who has coped through years of extreme hunger and refeeding syndrome, rebuilt damaged tissues, relearned how to eat intuitively, and does not obsess over his body’s size or shape.

Yet I still stick to my weight lifting schedule with a devotion that borders on fanatical. When there’s a deviation in my day and I can’t eat enough protein or find time for a workout, I still feel those first eruptions of alarm and get cranky. But instead of punishing myself for failure, I keep eating. I carry on with my plans and still have a life. I’m as close to well as I could ever hope to be, with high energy levels and a robust body that can bounce back from injury like my starved body never could. But there will always been a screeching need for structure and lots of exercise screaming in my brain.

Transition Cured My Eating Disorder

Fifteen years of self-hatred and sickness — gone in a flash. All I had to do was accept myself.

devonprice.medium.com

Gender transition was what finally allowed my mind to settle comfortably within my own body and made it possible for my habits to heal. There was no “fixing” my yearning to starve and self-harm without fixing the latent problem of my gender dysphoria. I did not want my body to heal and recover, because being fully alive would have meant being a woman. A shriveled, weakened half-life with an eating disorder was far preferable.

This is yet another argument for the harm reduction approach. Sometimes, a patient exhibits eating disorder symptoms because of some deeper, separate source of turmoil in their lives, and no amount of meal planning and grounding yoga can treat it. In order to stop having an eating disorder, I needed to come to terms with being trans. All a healthcare provider could (or should) have done in the meantime was support me in making my eating disorder as benign as possible.

But the recovery-fits-all approach to eating disorder meant that instead, I lied to every medical professional I ever saw, and all of my family and friends. I endured blood tests, echocardiograms, x-rays, and screenings for everything from Lupus to Rheumatoid Arthritis, never telling any doctor that the real reason my heart valves were swishing and my blood was so thin was because I wasn’t eating enough to make up for my hours of daily exercise.

I knew that once doctors understood the cause of my illness was my behavior, they’d never treat me respectfully again. I was aware of what I was doing and how much it was harming my body, yet I was also dully aware of why I felt such a pressing need to do it. I couldn’t stand to have anybody take away my right to starve and punish myself. It was the only means of coping with my misery that I had.

I wonder what could have happened if I’d been able to seek treatment for the effects of my eating disorder from a provider well-versed in harm reduction. If I’d felt free to be honest about my calorie restriction, perhaps a doctor would have thought to put me on ferrous sulfate pills or other nutritional supplements. Instead, I had to figure that out as a solution to anemia on my own, after months of battling fatigue. If I’d been open about my over-exercising, my physician never would have admonished me to “make sure to stay active” while I was sick. Instead he would’ve realized my illness had been worsened and prolonged by my addiction to being active.

If I had found a supportive, harm reducing community for eating disorder sufferers, I might have been able to learn helpful tips. Maybe I would have found gentler ways to exercise, or suggestions for meals that nourished me better without leaving me feeling overfed and bloated. Perhaps if I’d known other people who tried to shrink their bodys for gender dysphoric reasons, I’d have learned sooner that when I wear a binder, much of my body loathing disappears. Or maybe I would have just kept on hurting my body for just as long, in all the same ways, but I would have felt less alone and broken while I was doing it.

I can’t know for sure, but I think any step away from judgement and toward acceptance would’ve helped. Suffering thrives in the darkness and silence of shame. And when everybody around you evaluates you as either sick or broken, it’s hard to love yourself enough to even bother trying to heal. We already know empirically that eating disorders are sticky and relapse-ridden; only about 21% of people ‘get better’ and make a full recovery, and even for them it takes years. So why are we still applying the ideals of abstinence to all ED patients, when we know that approach doesn’t work for most substance users, gamblers, survival sex workers, or self-harmers?

With such an abundant research literature supporting the notion of harm reduction, why do our hospitals, shelters, government services, and nonprofits keep pushing a one-size-fits-all goal of recovery onto people who make stigmatized choices? Some of us will never be able to change. Some of us will never want to. Those of us who make frowned-upon choices are quite used to being told our lives lack innate meaning. And believing we’re already lost causes sure makes it hard for us to care for ourselves — or to ever trust anybody claiming to offer us help.

"Dead Addicts Don't Recover": ACT UP's Needle Exchange and the Subjects of Queer Activist History

Abstract. At the start of the 1990s the New York chapter of the activist group AIDS Coalition to Unleash Power (ACT UP)…

read.dukeupress.edu

But a softer, freer, more accepting, more life-affirming view of addictions and compulsive behaviors is possible. It’s evident in our history. Through the work of movements such as ACT UP, we’ve seen how a harm reduction approach can save the lives of sexually active queer people and drug users. And can embrace harm reduction as a way to preserve the dignity and freedom of eating disorder sufferers, too — as well as anyone else who has been told their needs are too large, too inappropriate, too wrong, or too bizarre. Stigma kills, even as it claims to cure. But acceptance sets us free.

If you’d like to learn more about harm reductionist approaches to eating disorders, I recommend checking out Nalgona Positivity Pride, as well as this excellent article by Kastalia Medrano.