No matter how much you think you know about the eating disorder anorexia nervosa, odds are one image comes to mind: an emaciated white teenage girl. But that stereotype doesn't line up with many experiences people have with eating disorders. And it can have major consequences for them.

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No matter how much you think you know about the eating disorder anorexia nervosa, odds are one image comes to mind: an emaciated white teenage girl. But that stereotype ignores the fact that anorexia knows no age, gender or race, and it sidesteps the reality that anorexia can happen at any body weight.

The current edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) defines anorexia as calorie restriction leading to a significantly low body weight, accompanied by body-image disturbance and an intense fear of gaining weight. Atypical anorexia nervosa — sometimes called “higher weight anorexia” — is defined in the DSM-5 as having all the distortions and restrictive eating behaviors of anorexia nervosa, but without a visibly emaciated body, said Jennifer Gaudiani, MD, author of “Sick Enough: A Guide to the Medical Complications of Eating Disorders,” and founder of the Denver-based Gaudiani Clinic. “Unfortunately, that means that even as patients with anorexia nervosa get missed in the doctor’s office, partially related to lack of physician training in eating disorders and partially related to physician internalized size bias — where a thin person is assumed to be healthy — the patients in nonemaciated bodies with atypical anorexia nervosa really get missed.”

Erin Harrop, a doctoral student in social welfare at the University of Washington who is currently conducting research on atypical anorexia, said when someone has typical anorexia, its severity is primarily based on BMI, rather than on symptoms like calorie intake, mental obsession or medical complications. But when researchers consider whether severity ratings based on BMI are meaningful, the answer for the most part is no. “People with atypical anorexia have more body-image disturbance, whereas typical anorexia may have more medical complications, but we are seeing loss of periods, bone loss, orthostatic hypotension and electrolyte imbalances in both,” she said. Orthostatic hypotension is an abrupt drop in blood pressure when someone stands up. “When we look at things that are hallmarks of malnutrition, we’re seeing that whether it’s a typical or atypical population.”

Gaudiani said research shows that medical complications from severe calorie restriction can be serious at any body weight, and Harrop adds that research makes a stronger case that weight suppression itself — the difference between a person’s highest and current weights — drives severity of symptoms, noting that going from a BMI of 50 down to 19 is very different from going from a BMI of 19 down to 16. “You could have someone lose 60 percent of their weight and still be considered a normal BMI.”

One reason the myth that anorexia isn’t possible in people in larger bodies is extremely harmful, Gaudiani said, is because those individuals may not believe they are “sick enough” to seek help, even though their risk of dying is double that of someone of the same age without anorexia. “In fact, the medical system may tragically encourage them in restrictive behaviors and praise weight loss that occurred as a result of eating-disordered behaviors,” she said. “Patients who believe this myth may think they are ‘supposed to’ restrict caloric intake and lose weight in order to be healthy. Eating disorders are never healthy.”

Harrop said clinicians tell underweight anorexia patients that they need to eat more and gain weight, and that gaining weight is OK. The opposite is true when the patient is overweight. “We spend a lot of time telling them what they already believe, that they eat too much and weigh too much. We’re playing into their eating disorder,” she said. “They may be fainting or having gastrointestinal pain (from low GI motility), and they’re not treated the way they would be if they were underweight — they’re treated like they’re eating too much.” Low GI motility is a common side effect of severe caloric restriction or weight loss.

Harrop herself has experienced both sides of the coin, having received inpatient treatment for anorexia at lower and higher weights. In both cases her symptoms, which included severe food restriction and overexercising, were severe enough to qualify for inpatient treatment, yet when she was admitted at a higher body weight, her therapist refused to believe that she had anorexia, and her food was restricted at meals. She frequently hears similar stories, including from the women enrolled in her current research study. “They have been told their entire lives that what they eat is too much, and what they weigh is too much, and this falls in perfectly with an anorexic mindset,” she said.

Another consequence of this blind spot? Insurance may not cover treatment for atypical anorexia, especially if policies exclude the category of “Other Specified Feeding and Eating Disorders,” which includes atypical anorexia. “Many patients with atypical anorexia nervosa feel so missed by the medical system that they turn to fraudulent online ‘recovery’ communities that offer unscientific and potentially harmful solutions,” Gaudiani said, adding that the medical and eating-disorder communities both need to do better. “Eating disorders come in all shapes and sizes, and you cannot tell who is healthy by looking at them. Weight should not be used as a predictor of medical wellness, with the exception perhaps of people at the far ends of the weight spectrum.”

Harrop said we should be concerned about overly controlled, restrictive, obsessive food thoughts and behaviors — in ourselves and others. “That for me is where we draw that line. If we have to measure out something and weigh it before we eat it, if we’re spending all of that time and energy and obsession and that’s ruling our lives, and our talking and thinking is all about weight and body and food, that’s not a balanced healthy life,” she said. “In our society it can look healthy to be really obsessive, but the cost on our relationships and our quality of life is really high. We need to put the weight aside and look at the behaviors and mentality.”