Harm Reduction Is for Eating Disorders, Too

    There must be all kinds of unexplored applications for harm reduction, but the one I always come back to is bulimia. This is partly because, like drug use, it revolves around a specific behavior—easy to isolate and name—and partly because I’ve been bulimic for about 12 years now, so it’s on my mind a lot. But it turns out that harm reduction maps quite well onto any disordered eating behavior. For a lot of people, it stands to produce better results than conventional treatment. It’s just not being offered.

    Mental disorder diagnoses are typically chronic, approached not as things you recover from so much as things you live with and learn to manage. But because many people do recover from eating disorders (ED) and substance use disorders (SUD), recovery is considered the only acceptable goal. You don’t try to live with them; either you die, or you stop.

    ED and SUD have much in common: physically stereotyped, to the detriment of all involved; alternately stigmatized and romanticized depending on who’s doing them; increasingly diverse, even if media coverage and clinical research focus on the subgroup with the highest mortality rate (anorexia nervosa and opioid use disorder, respectively); fictionalized as linear-progression stories where people hit rock bottom, then get better. They’re both usually okay to disclose as something from your past that you recovered from, but make people super uncomfortable if you say you do this stuff currently and have no immediate plans to stop.

    The differences are more material. You can’t compare harms associated with ED to those associated with SUD because only one of these is criminalized. People with ED don’t have the risk of increased blood-borne disease transmission, incarceration or death from a poisoned supply. 

    What they also don’t have is harm reduction. 

    “No one who I’ve met, in my clinical work or otherwise, says that they are an eating disorder nurse, psychiatrist, clinician, who applies a harm reduction lens. Nobody,” Andria Bianchi, a Toronto-based bioethicist who has studied harm reduction for anorexia nervosa (AN), told Filter.

    “They should be in existence, so that people can get treatment and still maintain a good quality of life. And that may end up being a quality of life that’s good with an eating disorder.”

    This is the prevailing mindset: that harm reduction is not ethically defensible so long as abstinence still has any chance of working. 

    There is some precedent for clinical ED harm reduction, but it’s been limited to a very small subset of patients. Specifically, harm reduction has been used as a last-resort treatment for people with chronic, severe AN who have so persistently not responded to abstinence-based treatment that the only remaining outcomes are for the clinician to compromise or for the patient to die. Only then is harm reduction considered. 

    Harm reduction has not been clinically considered for AN patients who are younger or whose illness presents atypically, nor for anyone with any of the other seven feeding and eating disorders recognized in the DSM-V, the best-known of which are bulimia nervosa (BN) and binge-eating disorder (BED). (Lots of people engage in behaviors attributed to more than one ED, just as lots of people with SUD use more than one substance. And just as SUD often goes unnoticed among people outside a physical stereotype, anyone at any weight can have any ED).

    “I have to say, the harm reduction model applies much more directly to anorexia nervosa than binge-eating and bulimia nervosa,” Michael Strober, editor-in-chief of the International Journal of Eating Disorders and director of UCLA’s Eating Disorders Program, told Filter.

    Strober, who has held both positions since the early ’80s, said this is because “binge-eating, which includes bulimia nervosa, is much more amenable to treatments, generally speaking, than anorexia nervosa. You can have binge-eating for a considerable period of time, after which it can go into remission for long periods of time. So [harm reduction] for bulimia nervosa is not as easy to support as it is in anorexia nervosa—where it is known that if the disorder continues into the third decade the likelihood of a full recovery becomes very, very low. But that’s not true in bulimia.”

    What about people with ED other than refractory AN who aren’t ready for, or simply don’t want, full recovery—but who do want to address some symptoms, and reduce some risks? Is there an applicability of harm reduction for them?

    “Well, I’m sure there is,” Strober said. “But that begs the question, when somebody says they’re not ‘ready to give it up,’ what that means. And whether they’ve had the appropriate care to address that.” 

    This is the prevailing mindset in the ED field: that harm reduction is not ethically defensible so long as abstinence still has any chance of working. A patient might say they don’t want full recovery, but that’s only because they don’t really know what they want.

    Personally, I think what I want is choice. We should question the validity of a treatment model that goes against the patient’s own goals. We should question the ethics of letting anyone spend decades in a cycle of unsuccessful abstinence treatments until they finally hover close enough to death to merit being informed of their other options. We should question the justification for not extending harm reduction to everyone.

    “Clinicians sometimes are really uncomfortable if patients make decisions that are ‘clinically’ harmful,” Bianchi said. “But there are also harms to not working with someone while they’re engaging in those harmful behaviors. There are different types of harms.”

     

    What Could ED Harm Reduction Look Like?

    Dr. Josie Geller works in a tertiary care ED program at a hospital in Vancouver reserved for patients, mostly with AN, who haven’t responded to lower-intensity care. After 20 years in the field, it’s her view that not only can harm reduction be appropriate, “very often it’s the best treatment”—for any type of ED, not just severe AN.

    ED treatment models have traditionally used two patient variables to determine what regimen to assign: medical acuity (whether they need immediate hospital care) and life interference. In 2013, Geller authored British Columbia’s current ED Clinical Practice Guidelines and added a third variable: readiness and motivation for change.

    “It was quite a new way at the time—and it still is to a large extent—of thinking about treating different types of individuals with eating disorders,” Geller told Filter.

    Geller had discovered that the best predictor of patient outcomes was neither how sick they were nor how much hospitalization they required. It was the scores that came out of an interview she’d devised to assess their baseline interest in making change. Over the past two decades, that interview has been the single most consistent outcome predictor across all her hospital’s ED programs.

    Centering someone’s readiness for change is a counseling strategy called motivational interviewing (MI). It strengthens autonomy and motivation in ambivalent patients—a term that refers not to being uninterested in treatment, but to simultaneously wanting and not wanting to change.

    Along with MI, Geller emphasized the importance of including a patient’s loved ones when possible, and addressing concerns they might have over a plan that doesn’t push for full recovery. Their ambivalence can be as big a factor as the patient’s. Not everyone has a support network, and not everyone wants one. But for ED patients who do, outcomes are better when they get to choose who they want involved and what that involvement looks like, rather than when clinicians make those choices for them.

    Each time Linda was admitted, she’d be pushed to gain more weight than she was comfortable with. So rather than recovery, Geller focused on meeting her where she was at.

    Early in Geller’s career, she was developing a Community Outreach Partnership Program for ED patients who hadn’t responded to, or weren’t interested in, traditional methods (cognitive behavioral therapy; keeping a food diary; aiming for three meals and two snacks a day). These patients had been landing in the emergency department with heart problems or blood abnormalities—mainly from typically presenting AN, though Geller noted that such complications sometimes arise in people who are overweight and cycling through acute periods of rapid weight loss. 

    Her first patient was Linda*, a woman with AN known as a “revolving-door” admission; she ended up there about once a month, year after year. “She was really upset and unhappy with the care system,” Geller said, “because she did not want a full recovery.” 

    Each time Linda was admitted, she’d be pushed to gain more weight than she was comfortable with. So rather than recovery, Geller focused on meeting her where she was at.

    Linda loved to ride her bike. She loved to ski. She was a runner. A huge proportion of her joy, and her identity, came from doing these activities and being good at them. 

    “It was only after she heard me reflect that I understood the importance of those things in her life that she was willing to talk about how hard it was when, after a giant ride, she couldn’t get out of bed,” Geller said. “And how much she disliked having to come into hospital.”

    They developed a harm reduction plan with a shared goal: Linda being able to eat restrictively, and still ski and bike, without ending up in the hospital. Geller called it their “closet plan.” After consulting with a dietician, they put Linda’s bike, ski boots, running shoes and roller blades into her closet. When she wanted to go in and get them, they agreed, she would eat her way in. Not a huge amount of food; just some. 

    “And she never came back to hospital,” Geller said. “She actually never returned to what would be considered a ‘normal’ weight, but she continued doing the things that she liked, and she was able to work, and she was able to have many of the things in her life that she wished for. And it wasn’t using a full-recovery model.” Linda was in her 40s at the time.

    MI has been a pillar of harm reduction counseling for years. Peer workers take courses in it on their way to certification. ED specialists, primary care providers and nutritionists could easily employ it too, utilizing its toolkit of basic skills that includes the open-ended questions, affirmation and reflective listening that led Geller and Linda to their closet plan.

    Their approach also mirrors, almost exactly, Strober’s recommendations for alternative approaches to treatment-resistant AN: Promise patients that weight gain won’t be the focus; convey a genuine understanding of their rationale; encourage social and recreational activities that elicit “feelings of pleasure or mastery”; incorporate checkups with medical professionals aware of the plan; explore nutritional improvements that wouldn’t require significant weight gain, but only if you’ve worked together long enough to have developed mutual trust; get loved ones involved.

    Strober viewed those recommendations as palliative ones for hopeless cases, unrewarding work that wouldn’t satisfy anyone involved. Geller viewed them as revelatory. With a few adjustments to be scalable for the broader ED population (such as trading weight “gain” to “change” to account for the fact that most people with ED aren’t underweight) there’s a blueprint here for any provider willing to use it. Whether it would produce success stories depends on whether your definition of success includes any positive change or is exclusive to abstinence and recovery—but nobody’s denying that it works. 

     

    EATING DISORDER HARM REDUCTION STRATEGIES (CLICK TO EXPAND)

     

    Low-Threshold, Whole-Person Care

    In my long-running bid to find a decent provider for my treatment-resistant depression, I’ve been bounced many times on the grounds that I’m exhibiting “drug-seeking behavior”—which is true, as I am seeking the drugs I use to manage the treatment-resistant depression. But providers have also passed on me because they felt iffy about taking on a patient with a comorbid ED. 

    Both ED and SUD are specialty fields in which clinicians receive no training unless they specifically seek it out. Despite the ubiquity of comorbidities among psychiatric patients, and between ED and SUD specifically, the two are often taken as mutually disqualifying from traditional mental health services, rather than as issues that inform one another and are perhaps best addressed concurrently. 

    Eventually, all the access barriers to the prescription stimulants that had been allowing me to function meant that I just switched to meth. Similarly, I do suspect I’d have had better luck with my ED by now had I not been consistently rejected from primary and mental health care, which are usually the first-line recommendations for ED treatment anyway.

    Contrast this model to that of syringe service programs (SSP). People who access SSP, in addition to becoming much less likely to die, go on to be five times likelier to enter treatment and three times likelier to stop using drugs, even if recovery wasn’t an interest or priority when they first came in. 

    This is because SSP workers offer more than just syringes. They offer stems, socks, condoms, wound care, insurance enrollment and blood-borne disease testing. They connect people to housing, food stamps, counseling, medications for opioid use disorder and whatever other services they’ve figured out how to tap into. They do this because they understand people holistically, and know that issues like SUD and HIV/AIDS and sex work and food insecurity and homelessness do not exist in isolation and cannot be extricated from one another, at least not responsibly. 

    “By having a harm reduction lens and being willing to offer treatment to people who are still engaging in eating disorder behaviors, it’s very possible that they might be able to access other supports,” Bianchi said. “Like psychosocial support. If they’re not seen by an eating disorder treatment team because they’re not ‘allowed’ … they might not be able to access other really valuable supports that could improve their quality of life.”

    It’s not particularly helpful to insist patients aren’t allowed to have harm reduction because it’s not as good for them as a different treatment, which they are also not allowed to have.

    While careful to confine her endorsement to cases of longstanding ED, Bianchi thinks integrating harm reduction into treatment programs could improve patient care. Instead of discharging participants found to be, say, purging—“because there are certain expectations”—what if programs were reimagined using elements of safe consumption sites?

    “I do wonder if a harm reduction approach—for some people, with some types of eating disorders—could mean that a clinician could actually be there to supervise. Where they would know that, while under their care, they may binge and purge. They may [harmfully] exercise,” Bianchi said. “But maybe, as a harm reduction practitioner, you’d say, ‘Okay, we know you’re going to try to exercise, so we’re going to try to help you exercise in a safe way.”

    I’ve never received any ED-specialized treatment. Inpatient hospital programs aren’t really a thing for ED that aren’t life-threatening AN, but the bigger issue is that even outpatient programs regularly cost tens of thousands of dollars out of pocket. Private treatment centers—which bear an uncanny resemblance to the American rehab landscape, in terms of business model and general vibe—start out around $1,000 per day. 

    Even if they all produced sustained recovery rates of 100 percent (they do not), we would still need ED harm reduction as an option, because it doesn’t matter how effective something is if you can’t access it. It’s not particularly helpful to insist patients aren’t allowed to have harm reduction because it’s not as good for them as a different treatment, which they are also not allowed to have.

    That ED treatment is the realm of the affluent is part of why, culturally, ED are associated with white people. Yet people of color, as well as people who are queer, trans and/or outside the gender binary and people who are overweight, are all at higher risk for ED than their thin, straight/cis white counterparts. They’re also all less likely to receive institutional care. If they’re going to get connected to resources, it will be because grassroots organizations stepped in.

     

    Rethinking “Relapse”

    As substance rehab is basically just a place that forces you to dry out, an ED program is basically just a place that forces you to eat, in some sufficiently different way to however you were eating before. 

    “We call it treatment, but in reality it’s refeeding,” said Margaret Janse van Rensburg, a registered social worker in Ontario who’s been through three ED programs under various diagnoses, including BN. “It’s all about fixing and normalizing, instead of naturalizing and making spaces more accommodating.”

    In one program, Rensburg was not allowed to drink water outside of designated meal times, which only lasted 20-30 minutes. In all three, if she left what was determined to be, say, too much salad dressing on her plate she would have to do a “repair”—extra dressing at the next meal—to not jeopardize privileges such as a day pass home.

    She believes an ethical approach to ED would prioritize harm reduction, and that under pandemic conditions many people are increasingly relying on their ED to survive. All ED are associated with increased risk of suicide, as is the case with SUD, too.

    “Are there administrative discharges? Of course. It’s analogous to people who get illicit drugs smuggled into their program. If you’re smuggling in drugs while you’re in treatment for drug use, there is no point in treatment.”

    ED programs, hospital-based or otherwise, have a strong culture of recovery. If full abstinence from disordered behavior isn’t someone’s goal, they likely won’t be offered admission.

    Treatment itself comes with a powerful taboo against “relapse.” ED patients can face discharge if caught bingeing, vomiting, using laxatives, exercising, water-loading, hiding food, declining food—including condiments—or simply weighing something other than what staff has decided they should weigh.

    “I mean, if there are people who are adults and who for whatever reason are not following a sensible treatment plan, and that continues beyond a certain point, are there administrative discharges? Of course,” Strober said.

    “It’s analogous to people who are getting illicit drugs smuggled into their treatment program and when it’s found out they’re administratively discharged, [or] told ‘this has to stop or else your treatment is futile.’ If you’re smuggling in drugs while you’re in treatment that is designed to mitigate drug use, there is no point in treatment.”

    A harm reduction program wouldn’t be like this. It would acknowledge that recurrence of symptoms does not correlate to lack of will, and that it shouldn’t be possible for anyone to “fail” health care. Visible illness wouldn’t be a justification for withholding treatment.

    “Relapse” isn’t a real metric of anything. At most, it’s a sign that the current plan is failing the patient, rather than the other way around. Instead of approaching ED behaviors like bingeing as all or nothing, abstinence or failure, a harm reduction model would reframe them in terms of how chaotic—or not—they are when they happen.

    “It may be more relevant to look at life interference,” Geller said. Someone who binges and purges, for instance, might only do so once a week, “but maybe it lasts all day long and has a two-day hangover. Versus somebody who, maybe they binge every day but it takes 20 minutes and it really doesn’t affect their life at all.”

     

    Acknowledging the Good

    Substance use exists on a spectrum. Most of it isn’t SUD. Some of it is physiological dependence. Some of it is situational. Some of it is for pleasure—sought out for enjoyment, not because anything’s wrong.

    While most disordered eating doesn’t meet criteria for an ED, it’s also true that—even in its most fleeting and least harmful forms—disordered eating probably always indicates some underlying fracture. There are times when I can almost think of even my BN as a fun pastime with little correlation to the rest of my life, but this never quite manages to be true. 

    As a matter of bodily autonomy, though, there still ought to be more movement around the idea that if someone with disordered eating isn’t dutifully struggling to order it, they have the right not to. 

    Shame and stigma don’t improve people’s health; support does. It would be significantly more helpful to people with ED if everyone else would normalize ED behaviors—stop critiquing how and what people eat—rather than continue trying to force them into someone else’s definition of normative eating, which they have clearly already tried and found to not currently meet their needs. 

    “There’s this idea that we can measure ‘recovery’ and what’s ‘recovered enough,’ but it’s always by someone else’s standard,” Rensburg said. “Who decides what counts as breakfast, lunch and dinner?”

    Eating behavior, like any human behavior, isn’t one-size-fits-all. The Western idea of “three squares a day” was installed by colonizers and codified in its current form by the Industrial Revolution. It maximized labor by relegating most of our eating to outside peak work hours, supplanting our intuitive way of eating. “Normal” eating is a function of capitalism, not biology, and really isn’t something that should require mandatory participation. The only real reason to keep trying to eat this way is that everyone else does, and not being able to share meals with people is often quite isolating.

    This is the thing with stigmatized behaviors. If they were only their bad parts, and none of the good, we wouldn’t do them.

    None of the health care professionals who’ve told me I should stop doing BN have ever told me anything useful to do instead. But I like to imagine that if I ever found a harm reduction provider, they’d see the issue in pushing someone to drop one of the bedrock routines in their life with nothing to take up the function it served. They’d have empathy for how a habit supports, as well as for how it harms.

    BN isn’t something I’d say I enjoy. It just brings me release, a way of coping with any number of everyday things that are otherwise unnavigable for me. And it’s not that recovery doesn’t seem appealing, but when it does it’s because I’m imagining a recovery where I get to transcend the parts of the disorder that hold me back but still keep the ones that push me forward.

    I’d prefer it involve less life interference. But I can’t see how I’d last the whole rest of my life without needing it at least occasionally, and I’ve found that my mental health gets empirically way worse whenever I try to give it up entirely. At the moment I’d just like to make it more manageable, the way it used to be.

    This is the thing with stigmatized behaviors. If they were only their bad parts, and none of the good, we wouldn’t do them. In addition to and alongside addiction, people use drugs because they give us something we wouldn’t have without them. It could be community, or sleep, or functionality, or a way to kill time, or relief, or adrenaline, or joy. People hold onto disordered eating for similar reasons. If someone wants only a partial recovery, it’s because they want to keep the parts that are good. They deserve a provider who sees that, rather than one who believes them confused. 

    So many of us are taught our ED is something we have to kick before we’re allowed to start our real lives, even as we keep getting older, even if we know the treatment game is rigged. Few are taught that you can, in fact, live with a stigmatized disorder and still deserve health care, even if you never recover. That there are tools for making the chaotic parts of your life less so, without being forced into a lifestyle that doesn’t fit you. That balance is as good a goal as abstinence. That if your particular way of living is how you meet your needs in that moment, then it’s valid.

     


     

    Photograph via Pixabay

    *Name has been changed

    • Kastalia is Filter‘s deputy editor. She’s previously written for outlets including NewsweekVICE and Gizmodo, and also works for a Brooklyn syringe program field-testing low-income New Yorkers for hepatitis C. She uses meth.

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