‘There’s a huge fatphobia problem in the eating disorder world’: Even in treatment, weight stigma fails patients

This is part of a series about new obesity drugs that are transforming patients’ lives, dividing medical experts, and spurring one of the biggest business battles in years. Read more about The Obesity Revolution.

Shira Rosenbluth went on her first diet at 10 years old. It was her own idea: She’d learned that a neighbor was doing some sort of junior WeightWatchers program, and her parents encouraged her to stick with it even after Rosenbluth changed her mind. It took only weeks for her to develop an eating disorder.

For the next four years, she purged — but her symptoms mostly went unaddressed by adults, perhaps due to her weight. “I wouldn’t say I was fat at that point, but I was in a non-thin body,” said Rosenbluth, now a 34-year-old licensed clinical social worker living in West Hollywood, Calif.

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She remembers leaving a Passover seder to purge multiple times in one night. “And that was the first time my mom was like, ‘Oh wait, I think she actually does have a problem.’”

At 14 years old, Rosenbluth was admitted to the first of many treatment programs that she would experience throughout her adolescence and adulthood. In retrospect, she says, every treatment center was steeped in weight stigma. That first time she went to an inpatient program, a doctor noticed that she wasn’t eating much, and congratulated her on the weight she’d lost during her time in treatment. She remembers he framed it as: Look what happens when you don’t binge and purge! But the message that Rosenbluth received was: Your body is different from other patients here. You are supposed to feel a little hungry.

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People with larger bodies who struggle with eating disorders frequently face bias from the people who are supposed to help them, according to experts. “I’ve had so many patients who have come to us that have experienced so much weight stigma in treatment centers and outpatient [care],” said Cheri Levinson, a psychologist and the founder and clinical director at the Louisville Center for Eating Disorders.

The issue may be about to get even more pressing for teenagers and young adults. Some experts fear that even more kids will develop eating disorders in the wake of the current frenzy over weight loss drugs, as well as new American Academy of Pediatrics guidelines on obesity treatment that recommend weight loss drugs for kids as young as 12 and bariatric surgery for kids as young as 13.

There is little consensus about how to protect young people seeking treatment for eating disorders from harmful ideas about weight, or whether treatments for obesity and eating disorders can safely coexist at all within the medical system. And while the vast majority of eating disorder professionals would never prescribe weight loss to somebody recovering from an eating disorder, each clinician’s approach to treatment is affected by their individual beliefs about, and understanding of, obesity. The strong disagreements within the profession about how to best address obesity and weight stigma may leave patients susceptible to inappropriate or harmful care.

STAT spoke to 11 eating disorder clinicians and researchers about the way those in the field approach this disagreement, and how it may affect the care young people receive for eating disorders.

“It is a longstanding tension in our field that’s been around for decades,” said Christine Peat, the director for the National Center of Excellence for Eating Disorders and a clinical associate professor at the University of North Carolina. But as popular culture’s wave of body positivity threatens to become engulfed by a renewed focus on explicit weight loss tactics, “there is something unique about this current moment that we’re in.”

How weight stigma can shape eating disorder treatments

Clinicians often fail to identify eating disorders in larger patients to begin with. One study found that patients with atypical anorexia (which means they have the same disorder as anorexia, but don’t appear extremely underweight) suffer for over 11 years on average before receiving a diagnosis.

Eating disorder professionals know that, once diagnosed, people with active eating disorders should not be counseled to lose weight, no matter their size. But weight bias still exists among eating disorder professionals, and it can have unintended consequences for people trying to recover.

Rosenbluth continued struggling with disordered eating as she grew up: bulimia at first, and later anorexia. At 29 years old — 15 years after her first attempt at treatment, and after years of continuous outpatient care with a therapist and dietician — she sought serious help again. At a treatment center that she believed would take a weight-neutral approach, she recalls being treated differently by staff because of her size. Every patient was asked to weigh and measure their own food, a practice that felt damaging to Rosenbluth. When thinner patients were hungry for more, they were praised for listening to their bodies, while staff labeled Rosenbluth noncompliant if she wanted more food.

“It wasn’t until I left treatment where I started to look at all the things that happened and I was like, ‘Oh, you never actually had the chance to even have a shot at recovery,’” Rosenbluth said. “There’s a huge fatphobia problem in the eating disorder world.”

Weight restoration is a key part of eating disorder treatment for people who are extremely sick, often from anorexia. But in standard clinical guidance, patients who have a higher body mass index aren’t necessarily given the goal of returning to their previous weight. Rosenbluth says she never gained weight while in treatment.

“When I started training, we thought everybody should get back to the 50th percentile,” said Tracy Richmond, a physician and director of the Eating Disorder Program at Boston Children’s Hospital. This means that regardless of whether a child or teenager was at a much higher BMI before their eating disorder, their weight restoration would stop at the median BMI for all people their age. “And that’s just crazy, right?”

If a patient has always landed in a higher weight percentile for their age cohort, then they need to bring their weight back up to that same percentile, according to eating disorder experts. That’s because some bodies are always going to be bigger. With parents and children, Richmond uses a metaphor with dog breeds to explain.

“If you are born into a Saint Bernard body and you starve yourself, you’re not a whippet, you’re a starved Saint Bernard,” she said.

A teenage girl, for example, could gain most of her weight back — enough to start menstruating again and be seen as physically recovered — but her brain would remain in starvation mode, and unable to eradicate the thinking that underpins disordered eating, Richmond said. “There is just something about a well-nourished brain versus an under-nourished brain, in the way that they take things in and where their thoughts land.”

When the goal for weight restoration is the median BMI, research suggests, that can lead clinicians to underestimate patients’ level of malnutrition. Patients then reach their underestimated goal weight faster than they would an individualized goal, and are discharged too quickly, which puts them at higher risk for relapse.

Richmond said that it’s only been in the past 10 years or less that this practice changed at Boston Children’s Hospital. There isn’t data on how many treatment centers still limit weight restoration by using the median BMI method, but Levinson estimates that there are plenty that continue the practice.

“It perpetuates the eating disorder,” said Levinson, who is working with her team on a paper about how weight stigma persists within eating disorder treatment.

Many clinicians say they take a case-by-case approach. If a patient once gained weight suddenly, perhaps due to a binge eating episode or in response to trauma, they may not need to be brought back to that peak weight, but rather to whatever their typical weight was outside of that rapid gain.

However, this practice can be challenging with bigger patients, as insurance companies do not always cover inpatient treatment for people at higher weights. Many will only cover hospital care until somebody is at what insurance companies determine to be a “minimally safe” weight, said Colleen Schreyer, a psychologist and assistant professor of psychiatry and behavioral sciences at Johns Hopkins School of Medicine. That means larger patients and their families may have to choose between paying out of pocket for further treatment or leaving treatment before they’ve sufficiently recovered.

The tension between treating obesity and treating eating disorders

Not only can weight stigma threaten the recovery of eating disorder patients who happen to occupy larger bodies, many eating disorder experts worry that any clinical attempt at weight loss puts people, especially adolescents at higher weights, at risk for eating disorders. Recent research has shown that almost a quarter of children and adolescents from 16 countries display disordered eating habits. That increases among those with higher BMIs.

Some eating disorder experts see any treatment aimed at weight loss as a form of weight stigma. “I don’t think that there should be any form of treatment for obesity. And I realize that I am at the extreme of this opinion,” Levinson said.

But others see a clear difference between clinical treatment for obesity and other, potentially harmful practices. Obesity is associated with a wide range of diseases, and clinicians broadly see much reason to pursue weight loss treatment for youth.

“I think you have to make a distinction between evidence-based interventions and dieting. When people put themselves on diets, they often are not healthy approaches to eating,” said Jennifer Wildes, an associate professor and director of the Eating Disorders Program at the University of Chicago. Practices like skipping meals, cutting out entire food groups, or exercising excessively should not be recommended by clinicians, she said.

When the AAP guidelines for obesity treatment came out, reactions revealed a longstanding rift within eating disorder communities around obesity and weight loss. While some believe that managing weight loss and treating eating disorders are completely in opposition, others disagree.

“It’s probably the hottest controversy in the field,” said Wildes.

Some experts, like Wildes, say that there are actually similarities between eating disorder treatment and behavioral weight management. Behavioral weight management often involves counseling from multiple clinicians on lifestyle topics like nutrition, exercise, problem-solving, and more.

“Some of these basic building blocks of what we do in eating disorder treatment early on and also in what [the AAP guidelines] referred to as behavioral weight management have a lot of those same tenets,” UNC’s Peat said.

Both clinicians treating eating disorders and those treating obesity will also recommend patients self-monitor their eating, said Wildes. That doesn’t mean paying attention to calories, she noted, but to context — what time a person is eating, where they are, and how they feel. Peat and others noted that behavioral weight management, a core recommended therapy in AAP’s new obesity guidelines, has been shown to modestly help people with binge eating disorder.

Yet Lisa Kilpela, an assistant professor at the University of Texas Health Science Center at San Antonio and eating disorder specialist who works mostly with older women, said she has also seen too-restrictive daily goal intakes recommended to patients with binge eating disorder or even higher weight patients with bulimia, pushing them toward the other end of the disordered eating spectrum.

“For people who are more vulnerable, it can really set off a chain effect of bad circumstances,” said Kilpela.

The stakes can get higher when screening youth for potential surgical weight loss interventions. Schreyer of Johns Hopkins works both with youth struggling with eating disorders and those age 16 and older who are considering bariatric surgery. When teens come in for potential bariatric surgery, she meets with them for six months beforehand, as does a nutrition team and a psychologist. If Schreyer detects symptoms of disordered eating, she’s firm that any weight loss treatment is not appropriate for the person.

She is lucky, she said, that the team she works with respects these decisions. It’s a sign that, “there’s a possibility to make this work,” she said.

But outside of her own clinic, at centers where there’s less awareness about eating disorders or fewer resources available to screen and spend time with patients, “I hear the horror stories,” Schreyer said.

What recovery looks like

As someone who received harmful, stigmatizing treatment as a patient, Rosenbluth is cautious as a therapist who now works with clients dealing with eating disorders. It’s hard for her to know if a given clinician or treatment center will provide care that inadvertently reinforces weight stigma, further harming patients.  She had one teenage client, she said, who was put on a low-calorie diet while in the hospital for an eating disorder, just to make sure they did not gain weight.

While there’s still a risk that her patients will encounter weight bias with other approaches, Rosenbluth prefers to recommend more creative solutions like hiring a recovery coach to eat meals and go grocery shopping with clients, or enlisting their family and friends to provide meal support.

Rosenbluth herself never got better in residential or inpatient care for her eating disorder. She credits her recovery to a friend, who is also a psychologist, who let Rosenbluth stay with her and reassured her that getting thin is not the same as getting better.

“It was very much like, ‘We want you to have a full life and wherever your body ends up, it ends up,” Rosenbluth remembered. “We’re not scared of it.’”

Other parts of this series examine how pharmaceutical makers are promoting a new message about obesity; assess attempts to personalize obesity treatment; explain the origins of a flawed weight metric, the body mass index; and delve into the debate over new childhood obesity guidelines. Read more about The Obesity Revolution.

STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.

Source: STAT