Who’s Considered Thin Enough for Eating Disorder Treatment?
Shira Rose and I are eating avocado toast at a Bluestone Lane in midtown Manhattan. Or rather, I’m eating avocado toast and Rose is looking for her phone. “I need to take a picture,” she says. Rose is a well-known body positive style blogger and influencer, but this photo isn’t for the ’gram; at least, not entirely. After she eats everything but a few crusts, Rose needs to text a photo of her empty plate to her dietitian — to prove she’s eating.
Now 30, Rose has struggled with anorexia nervosa since she was 10 years old. Earlier this year, she spent four months trying to stabilize her condition at a California eating disorder center. By the end of that stay, everyone on her treatment team was optimistic that she would be able to continue to make progress back at home in New York with the support of a partial hospitalization program, where patients live at home, but receive several hours of therapy and supervised mealtimes daily.
But it’s now a month after her return to New York and things aren’t going so well. When Rose woke up this morning, she passed out as soon as she stood up. “The same thing happened yesterday morning,” she tells me. “I know I cannot go on like this.” Until this slice of avocado toast, Rose stopped eating everything except broccoli, cauliflower, and bell peppers two weeks ago, when she was challenged to eat ice cream during a program outing. But it wasn’t just her eating disorder telling her to reject a forbidden food. “The program’s dietitian pointed at two other clients and said, ‘You each get two scoops,’” recalls Rose. “Then she pointed at me and said, ‘You get a kiddie scoop.’” A spokesperson for the treatment center declined to comment on the specifics of Rose’s case citing HIPAA regulations, but said that all clients are given individualized meal plans based on their nutritional needs and therapeutic goals. But Rose believes she was told to order the smaller serving for one reason: “I’m in a bigger body than everyone else.”
I can’t tell you Rose’s weight or clothing size because discussing specific numbers is triggering for eating disorder patients. But suffice to say: She doesn’t fit the expected visual of the emaciated anorexia patient. Rose says she “felt big, but was probably average-sized” as a child when she began dieting; by her late teens, she was “definitely fat.” Since then, her weight has gone up and down in big swings over the years, like most people with eating disorders.
The first diagnostic criterion of anorexia nervosa is that a patient is restricting their energy intake so much that they’ve reached “a significantly low body weight […] that is less than minimally normal.” By that measure, Rose has never qualified for a diagnosis of the disease she says she’s struggled with for over 20 years. Yet she checks every other box on the list: Prior to her most recent hospitalization, she developed orthostatic hypotension, which causes frequent blackouts. Once, in her early 20s, she passed out from hunger at the top of a staircase, fell, and gave herself a concussion. More recently, she’s shown signs of pancreatic failure — all common medical complications of anorexia. Most of all, Rose lives with a persistent and intense fear of gaining weight. “Of course I think I shouldn’t have two scoops,” she says. “I don’t even think I should have the kiddie scoop.”
“We’re seeing people in higher weight bodies actually being more symptomatic in terms of eating disordered behaviors by the time they enter treatment.”
As a culture, we tend to think that eating disorders don’t happen to people in bigger bodies — or if they do, those patients can’t be as physiologically sick as their thinner counterparts. This isn’t true. “You don’t have to be emaciated to be very sick from your eating disorder,” says Janell Mensinger, PhD, an associate research professor of biostatistics at Drexel University who studies how to improve eating disorder treatment and prevention programs.
Mensinger’s data emphasizes that body mass index does (BMI) not correlate particularly well with a patient’s symptom severity — and when it does, the relationship is the opposite of what we expect. “We’re seeing people in higher weight bodies actually being more symptomatic in terms of eating disordered behaviors by the time they enter treatment compared with lower weight patients,” she explains, noting that this is likely due both to these patients’ higher level of weight suppression — calculated by subtracting a patient’s current weight from their highest-ever weight — and the stigma they experience for being in a bigger body in the first place.
Rose says that refusing the ice cream counted as her “first strike” with the treatment program, which she was attending on a scholarship because she doesn’t have private insurance and the treatment center didn’t accept her Medicare coverage. (Rose qualified for Medicare after she received disability status after an earlier hospitalization for her eating disorder.) By the time we meet for avocado toast, she’s racked up two more strikes, and been officially dismissed from the program for non-compliance. (The center’s spokesperson said they do not have a “three strike” policy that mandates patient dismissal, but would consider three similar incidents to be “a pattern,” necessitating a conversation and “depending upon what was going on with the client, we would then immediately address that.”)
Although she’s continuing to work with a dietitian on an outpatient basis, Rose knows she needs the daily support of a partial hospitalization program. And her options for that are now pretty grim: Accept the lower-quality treatment available through her Medicare plan or find a way to pay tens of thousands of dollars for private treatment. Either way, Rose has to worry: Will her weight continue to define her treatment experience?
Just 0.6% of Americans will be diagnosed with anorexia nervosa during their lifetime, according to the National Institute of Mental Health. But if patients didn’t have to meet the weight criteria, researchers say, that number would be far higher. “Atypical anorexia nervosa” was added to the fifth edition of the Diagnostic and Statistical Manual as a subset of “other specified feeding or eating disorders” (OSFED) in 2013, in an attempt to capture this population. Its diagnostic checklist mirrors that of classic anorexia nervosa — except for the requirement that a patient have a low body weight as defined by their body mass index. And early estimates show that atypical anorexia may impact nearly five times as many people; one 2014 paper found it to occur in 2.8% of the population studied.
It’s not surprising that atypical anorexia would occur more often than its more famous sister diagnosis: There are more people in higher weight bodies in general, so proportionately, they should also represent more cases of just about any disease. But because it’s only a disorder subtype, it isn’t receiving the same research dollars as anorexia nervosa and is often dismissed in treatment as a less serious condition. The bigger question is, why are clinicians using body weight to delineate patients in this way — especially when it results in replicating the kind of body size biases they are trying to help patients escape?
“This is weight stigma,” says Deb Burgard, PhD, a psychologist in Cupertino, California who specializes in eating disorder treatment, as well as a co-founder of the Health At Every Size (HAES) movement. “It is everywhere in the eating disorder field. It’s terrible. And it’s killing people in all kinds of ways.”
It is true that humans can survive at higher body weights, despite restriction, for longer than they can once weight drops too low. But early studies on atypical anorexia suggest that restricting food intake results in many of the same physiological complications regardless of weight. When researchers compared 118 patients with “full threshold” anorexia nervosa to 42 patients with atypical anorexia, they found no statistically significant difference in each group’s rate of bradycardia (dangerously slow heart rate) and orthostatic instability (low blood pressure causing blackouts), according to a study published in a 2016 issue of the journal Pediatrics. The researchers did find that anorexia nervosa patients were almost twice as likely to stop menstruating as their higher weight counterparts — but one in three atypical anorexia patients still experienced that as well.
Erin Harrop knows all of this firsthand. A doctoral student at the University of Washington who studies the intersection of weight stigma and eating disorders, she spent much of her teenage years and early twenties bouncing between hospitals and treatment centers for anorexia so severe it led to kidney and heart failure before she achieved recovery. When she relapsed four years later, she lost 25% of her body weight but was still heavier than she’d ever been during her earlier admissions. During that inpatient stay, Harrop says, one therapist walked her into a room full of thinner patients and said, “They need to be here. Look at yourself. You’re going to be fine.”
“I understand that someone underweight may need 5,000 calories a day to re-feed and regain and I do not. But I’ve lost 30 percent of my body weight as well. Why don’t I need re-feeding?”
During her first hospitalization, when she was at a lower weight, “I was carried on a golf cart from room to room because the doctors thought my heart was too unstable for me to walk safely,” Harrop recalls. “When I was treated at my higher weight, I had the same heart condition — and I was encouraged to hit the gym a few times a week.”
Now a researcher in the field, Harrop worries about how such care discrepancies will impact other patients’ odds of recovery. “One treatment goal for anorexia is to get that patient to a body mass index of 22,” she says. “But how do you interpret that if you have a patient who comes in with a BMI of 31?” Should doctors ignore weight altogether and treat their other symptoms? Or should they try to get patients down to that goal BMI, even though it means reinforcing the kind of restrictive mindset they need to escape? “I understand that someone underweight may need 5,000 calories a day to re-feed and regain and I do not,” Rose says of the ice cream incident. “But on the other hand, I’ve lost 30% of my body weight as well. Why don’t I need re-feeding?”
Some eating disorder therapists would argue that she does. “No matter what weight you’re at with anorexia, living with chronic restriction causes your body to cannibalize itself,” Burgard explains. “You’ve lost fat tissue, but you’ve also lost muscle, bone, and brain matter. Re-feeding isn’t about getting everyone to the same medium-low body weight. It’s about repaying this debt to your body.”
Burgard has been treating her eating disorder clients with this strategy for decades, but her approach is not mainstream. Most eating disorder centers around the country continue to operate with strict re-feeding protocols for low weight patients, while their methodology for higher weight patients varies wildly. The Program for Obesity, Weight and Eating Research (POWER) at Yale University, for example, is a clinical research and training program that studies eating disorder treatment. An advertisement running on their website asks potential research subjects: “Interested in a free program for binge eating and weight loss?” Carlos Grilo, PHD, director of POWER, confirmed via email that the study (still in progress) addresses both binge eating and weight, but offered no further specifics. But Harrop is troubled by the implication that any kind of disordered eating can be resolved via weight loss. “We should be wary of prescribing any behaviors for fat patients that are considered pathological for thin patients, regardless of their eating disorder status,” she says. “This is supported by the research. And it’s also just about providing humane care.”
In addition to impacting physical health, eating disorder researchers have long known that living with chronic restriction can change your brain, too. “We call this a ‘starved brain,’” says Jennifer Gaudiani, MD, an internist who specializes in the medical management of eating disorders in Denver, Colorado. In some cases, research shows that a starved brain literally shrinks, losing both gray and white matter. But regardless of brain size, Gaudiani says, “when a person does not get adequate nutrition regularly, they’ll experience changes in their concentration, memory, fear response, and cognitive flexibility.” This last part is crucial: Starving your brain makes your thinking more rigid. So the obsessive, intrusive thoughts that are an eating disorder’s calling card become even more powerful. “This is why weight restoration is essential to recovering from a restrictive eating disorder no matter where your weight starts,” says Kendrin Sonneville, ScD, RD, an assistant professor at the University of Michigan’s School of Public Health. “We know that people who try to recover while maintaining their new, lower body weight are more likely to relapse, probably because those obsessional thoughts about food are still so prominent.”
The starving brain was long thought to manifest only at very low body weights, in part because the patients recruited for studies on anorexia nervosa are usually those with underweight BMIs. But researchers now argue that this kind of rigid thinking may be more connected to the degree of weight suppression they’ve experienced, not their actual body weight. By focusing on how many pounds a person has lost from their highest-ever weight, it’s easy to see how a higher weight patient might be a more severe case than a lower weight one: They may have started out in a bigger body and lost more total weight, so are experiencing more severe consequences despite appearing less sick.
“When a person’s brain has restricted for so long, they’re going to need a lot more food than the average individual because they need to compensate for the amount of time that food has not been readily available,” says Mensinger. “And that means gaining weight, and that’s the reality of recovery if you are weight suppressed. But many centers would put patients like these on a weight maintenance plan.”
Patients in higher weight bodies who report disordered eating habits are most likely to be diagnosed with binge eating disorder (BED), which is defined in the DSM 5 as having “out of control” eating experiences at least once a week for three months. 2.6% of adults will be diagnosed with BED during their lifetime, according to the most recent data, making it four times more common than anorexia. But the diagnostic criteria make no mention of the restriction that often precedes such binges, and that may be skewing its prevalence rate. “I do see a subset of patients who use binge-eating as a coping method without restricting first,” explains Sonneville. “But the vast majority are chronic dieters in a larger body, and we do such a disservice to these patients when we don’t even mention the word ‘restriction’ in the diagnostic criteria.”
Instead, medical professionals often congratulate so-called binge eaters when they do manage to lose the weight. “Doctors will say, ‘Well, whatever you’re doing is working!’ if a heavy patient does lose some weight, without asking to see what they’re eating or how much they’re exercising,” Harrop says. “Or they give blanket advice like, ‘Try to cut whatever you’re eating in half,’ when someone may already be dangerously restricting.” These doctors often wrongly rely on what Burgard describes as “the eating disorder body stereotypes that anorexia, bulimia, and binge-eating disorders are proxies for a small, medium, and larger bodies.” So a thinner patient may spend more time bingeing than restricting and purging, and a heavier patient may mostly restrict; both may be misdiagnosed.
In her role as a part-time social worker in a hospital emergency room, Harrop often assesses teenagers who present with eating disorder symptoms. Her job is to refer them for treatment. But according to the medical criteria she must follow, only patients at low body weights qualify for residential treatment. Harrop can sometimes fudge things; if a patient doesn’t meet the low body weight criteria but does report very low food intake, she’ll use that to justify a referral to inpatient care. “But there are many times when I feel that I have to refer them to a lower level of care than will truly serve them,” she explains. “I’m really tired of telling these kids, ‘You need to get sicker before we’ll treat you.’”
Body weight is so tied to our cultural understanding of eating disorders, it’s difficult to envision how treatment centers could move to a weight neutral treatment model. Encouraging all patients to eat the same amount of ice cream seems like an obvious starting point — but how does that all work in practice? Mensinger would like to see the weight threshold dropped from the diagnostic criteria for anorexia so that clinicians stop distinguishing between classic and atypical anorexia, which results in viewing one set of patients as more deserving of care than the other. She would ask doctors to instead consider a patient’s level of weight suppression. “We would then be able to capture many more patients who aren’t small enough to meet criteria right now,” she explains.
The bigger question is, why are clinicians using body weight to delineate patients in this way — especially when it results in replicating the kind of body size biases they are trying to help patients escape?
Burgard would go even further and shift diagnostic criteria away from weight status entirely. She wants to frame eating disorders in terms of the severity of a patient’s problematic thinking, disordered eating practices and the impact on their medical status. “Do you think our mission is to create norms for the way bodies should be? Or do you think our mission is to support the health of people in whatever body they have?” Burgard asked a discussion group during a recent conference for eating disorder professionals. “It was a conversation stopper,” she tells me. “There were physicians who came up to me afterwards and said, ‘I want to think about this, I’m trying to grapple with this.’ But they couldn’t say so openly. This is the really big split in our field.”
The night after our avocado toast snack, Shira Rose posts in her Instastories that she’s struggling, desperately. “I’m so uncomfortable because I ate for the first time today,” she says. “And I know I need to just sit with these feelings, but it’s very hard. I don’t know where I go from here.” A few days later she texts me a screenshot of her intake form for another East Coast treatment center where she’s hoping to get a scholarship. The form instructs her to list her height, weight, and then asks, “Do you have a personal weight loss goal?” Answering that question turns out to be optional but no explanation is given for why it’s asked at all. It’s moot anyway; Rose’s scholarship falls through for that center and she can’t afford to pay $15,000 out of pocket for a month of treatment, even with the help of a GoFundMe set up by friends.
In early June, Rose is able to secure another scholarship to return to the program in California for a second stay. It means uprooting her life all over again and she’s still not certain how she’ll stay in recovery on the other side, back in New York. But a few weeks after she leaves, she posts a photo on Instagram of two scoops of ice cream in a waffle cone. “I said YES even though my eating disorder was screaming at me,” she writes in the caption. “If I am truly able to surrender and let go, I will not recover into a smaller body. And you know what? I can choose two scoops of ice cream NO MATTER MY SIZE because my body doesn’t dictate whether or not I’m worthy of enjoying ice cream.”