This series was supported by The Pulitzer Center. This story is the third of the four-part series.
For years, the media image of an anorexic youth was an emaciated white female teen.
One of the biggest barriers that keeps people with eating disorders from getting help is a cultural stereotype so pervasive that eating disorder specialists have an acronym for it: SWAG, or skinny, white, affluent girl. But studies show that anorexia strikes people of all races at approximately equal rates, and bulimia is actually more common among Latinos and African Americans.
"Eating disorders do not discriminate,” says Christine Peat, associate professor at University of North Carolina Chapel Hill and director of the National Center of Excellence for Eating Disorders (NCEED). “Although there is still this predominant stereotype of the skinny, white, rich girl, it just isn't reflective of the patients that we're seeing.”
The problem is compounded by the fact that Black women in particular are nearly twice as likely as other groups to experience binge eating disorder, which tends to be taken less seriously than anorexia or bulimia but can have serious health impacts.
Recent studies have also found that transgender youth experience anorexia, bulimia, and binge eating disorders at two to four times the rates for cisgender youth.
Perhaps most insidious is the focus on weight and body size as indicators that someone’s in trouble. In fact, according to statistics from the National Eating Disorders Association (NEDA), only about 6% of those with an eating disorder are low weight.
The general view of a person with an eating disorder is “somebody who is not just underweight but really at death's door, (which is) such a small percentage of people with these conditions,” Peat said. “The vast majority of patients are not going to have frank signs or symptoms of an eating disorder. They are actually going to be well within normal or even elevated limits when it comes to BMI.”
This changed understanding is reflected in the rise of a relatively new diagnosis, atypical anorexia nervosa, which appears in people who are not clinically underweight. This sub-diagnosis was added to the DSM-5 in 2013 and in the decade since has accounted for a rapidly growing percentage of those with eating disorders. A growing body of research shows that people with atypical anorexia suffer effects just as serious as those with regular anorexia.
"There are all kinds of health and medical complications that you can have with atypical anorexia nervosa,” Peat said.
These misconceptions – and the resulting failure to identify and treat anorexia, bulimia, and other eating disorders – fuel a dangerous tendency to overlook and underdiagnose eating disorders in those who don’t fit the prevailing image.
"Because people don't present as what we think of stereotypical patients for eating disorders, they're just getting missed completely,” said Doreen Marshall, CEO of NEDA. “And then because you're getting missed, I think it reinforces the idea that treatment's not for me – or is too hard for me to access.” In addition, doctors are significantly less likely to ask their BIPOC patients about eating and weight concerns than their white patients.
Changing the public perception of who suffers from eating disorders is the mission of the Eating Disorders Information and Training Network, a web-based education and training program. The project aims to provide education and training for eating disorders diagnosis and treatment aimed at both the public and at physicians and other health care practitioners.
“The vast majority of physicians don't receive any training on eating disorders or if they do, it's maybe a lecture or two and that information may be really outdated,” Peat said. “Most mental health folks actually aren't trained in eating disorders, either. They might be more familiar with some of the diagnostic criteria because it's part of learning the DSM, but that doesn't mean they're equipped to actually do the care.”
To this end, the National Center for Excellence for Eating Disorders has developed a streamlined, web-based diagnostic tool for primary care practitioners: SBIRT-ED, which stands for Screening, Brief Intervention, and Referral to Treatment for Eating Disorders. The methodology is based on a similar screening tool developed for substance use disorders, depression and anxiety.
“If this is a framework that works, we don't need to reinvent the wheel,” Peat said. “Maybe if we catch people earlier in their disease progression, for example, at an annual wellness visit, they may not ever need to see a specialist like myself but instead can take advantage of other less intensive kinds of care. Part of what weʻre trying to do is increase the capacity of the entire health care workforce to engage in this kind of care.”
Melanie Haiken is an award-winning journalist who has written for Smithsonian, National Geographic, the BBC, CNN, AARP, Health magazine, MindSite News, Sierra magazine and the Washington Post, among others. She has a personal interest in the subject of eating disorders “As the mother of a child who spent many years in treatment for anorexia and bulimia, I encountered these barriers myself. And in the parent support groups I attended, I shared the experiences of other families hit hard by the expense of treatment and the denials of insurance support."
