Eating disorders are serious psychiatric conditions that involve an unusual obsession with food, weight and body shape. Eating disorders can be lifelong conditions — or even lead to death — if they’re not treated.
During the pandemic, disordered eating became much more common. Teenage girls were particularly hard hit. Nationwide, emergency rooms logged twice as many visits for girls with eating disorders compared to the year before COVID-19 began to spread, Centers for Disease Control and Prevention data show.
There’s some good news: Eating disorders are treatable.
But it can be exceedingly difficult to find care. Providers with the right training and cultural competency are hard to come by. Eating disorders are still highly stigmatized. And getting insurance to pay for treatment can be a battle.
The Seattle Times spoke with experts to find out what we know about eating disorders, what kinds of treatment work and why it’s so hard to get care.
What do we know about the prevalence of eating disorders?
It’s difficult to say exactly how common eating disorders are because estimates range widely, and people with one condition might also have another. The National Institute of Mental Health, for example, estimates that fewer than 1% of adults develop anorexia or bulimia over their lifetime, while global estimates suggest this number is closer to 2%. Some research suggests as many as 9-15% of people have an eating disorder at some point in their life.
People of color are less likely to be included in research studies, making it difficult to pin down prevalence in specific racial groups.
Some experts say there’s no reason to suspect differences in prevalence across races. But research does show that people of color are less likely to receive treatment for eating disorders, and that it’s harder for them to get an eating disorder diagnosis than it is for white people.
Prevalence in males and transgender people is often underestimated — and treatment in these groups is often delayed, too.
What are common misperceptions about people with eating disorders?
Some people with eating disorders face skepticism from those closest to them who don’t witness their disordered eating. People with eating disorders might hide their habits because they’re ashamed. They might also fear being misunderstood or the realities of treatment, which can be physically and emotionally draining.
“The attitude is there that, if we can’t see it, and we can’t test for it with a blood draw or X-ray, then it must not be real,” said Dr. Charissa Fotinos, Medicaid director at Washington State Health Care Authority. “There’s not a general broad understanding both within the clinician world, but also within the general public, that these are real issues and real disorders.”
The idea that people with eating disorders choose to be sick is also a myth, experts say. Lots of factors contribute to eating disorders, but choice isn’t one of them. Research suggests eating disorders are often caused by a combination of genetic and environmental factors, like stress or family upbringing. Societal influences like diet culture also play a role.
What is “diet culture”?
Diet culture, in general, is a pervasive societal belief that promotes thinness, equates health with body size and valorizes certain traits tied to eating disorders, like restricting calories or only eating certain foods.
Diet culture also ascribes moral value to foods and eating. Some foods are considered “good,” while others are “bad.” Similarly, diet culture includes fatphobic and body-shaming messages that some body sizes are ideal while others are unhealthy or undesirable. These messages permeate social media sites, though pro-recovery communities have also sprung up on TikTok and Instagram.
What are the various kinds of treatments for eating disorders?
The kind of treatment clinicians recommend is likely based on their patients’ severity, their treatment history, and in some cases, the availability of care nearby.
Outpatient care could involve therapy, nutrition counseling, at-home treatment called family-based treatment, or a combination of these things. The next level up is called intensive outpatient treatment, which can involve several hours of care during the week. Partial hospitalization, which is better described as “day treatment,” usually involves several hours of daily therapy at a treatment center. Residential care is 24/7 treatment.
Inpatient care is also around the clock and is for people whose physical or psychological symptoms are so severe that they’re at serious risk of complications, or even death.
All of these kinds of care can last weeks or months, and some people move back and forth between different levels, depending on how their recovery is going.
What do we know about how well these treatments work?
Unfortunately, research on effective treatments is scarce.
There’s also a dearth of providers who are trained in eating-disorder care that has scientific backing. In Washington, for example, only a handful of clinicians are trained in family-based treatment, the gold standard of care for youth with certain eating disorders. FBT involves several phases of at-home treatment that puts youths’ caregivers — with the support of therapists — at the forefront of providing care. In the early phase of treatment, caregivers assume control over when and how much their child eats; when youths’ relationship with food has improved in the later phases, they gain more choices around mealtime.
“I wish so badly that we had a dozen different fabulous evidence-based treatments that we could throw at this problem,” said clinical psychologist Peter Doyle, who along with his spouse, is among the few people in Washington who are trained to use FBT with their patients. “And we don’t.”
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What are some of the most common barriers to receiving eating-disorder treatment?
Research on this question is limited, unfortunately. But anecdotally, patients report that insurance, trouble finding a provider and stigma keeps them from getting the care they need.
Although insurance companies are required to cover mental health care at a level on par with coverage for physical conditions — a concept known as parity — insurers have found ways to exclude eating-disorder patients from certain kinds of treatment. Part of this has to do with how hard it can be for providers to convey patients’ psychological problems, said Kathleen Fugere, Washington’s director of psychiatric services at The Emily Program, a national eating-disorder treatment program with locations in several states.
Patients also struggle to find providers who know how to treat eating disorders. This is especially true for people with public insurance, since providers in community behavioral health settings rarely get specialized eating-disorder training, said Erin Accurso, associate professor of clinical psychiatry and behavioral sciences at the University of California, San Francisco.
Some people don’t get treatment, or face delays in care, because their loved ones don’t see them as the type of person who’d have an eating disorder. Adults might not get care for years because they don’t recognize their symptoms as a problem.
Hannah Furfaro reported this story while participating in the Rosalynn Carter Fellowship for Mental Health Journalism.
