It has long been assumed by healthcare professionals, researchers, and the general public that the defining characteristic of anorexia, an eating disorder that affects 1 percent of women, is being extremely thin. Until the 2013 publication of the Diagnostic and Statistical Manual of Mental Disorders (DSM–5), which is used by practitioners to diagnose mental illnesses, an anorexia diagnosis required a person to be at an abnormally low body weight.

However, the reality is that anorexia can affect anyone, at any size—even a person who doesn’t appear to be underweight. This is called atypical anorexia, a condition where a person meets most of the criteria for anorexia (like severely reducing their food intake in order to lose weight, being afraid of gaining weight, and denying the seriousness of their condition), but is still technically at a normal or even high BMI. But the enduring stereotypes about what the condition “looks” like can make it harder for people who need help to get it.

“The assumption that patients with low weight are more ill is reflected widely in recommendations for assessment, hospitalization, re-feeding, and recovery,” says Andrea Garber, PhD, RD, an associate professor of pediatrics in the division of adolescent medicine at the University of California (UCSF). A doctor, health professional, or even friends and family might not recognize the disorder in someone if they aren’t fully educated to recognize other signs and symptoms of the eating disorder, such as a preoccupation with losing weight and menstrual irregularities.

This was the case for Shira Rose, a body-positive fashion blogger and influencer currently in recovery from atypical anorexia. “I struggled with denial and lack of insight into my behaviors, especially when I was being praised by the world around me for starving and shrinking my body,” says Rose. “There was a time where I passed out [after restricted eating] and fell down the stairs, broke my nose, and had a severe concussion, but still no one pushed me to seek additional treatment. I wonder if it’s because my body went from fat to average and I never became underweight.”

But atypical anorexia is just as serious as any other eating disorder. In a study published in November, Dr. Garber and her colleagues investigated whether there were differences in weight history or illness severity in those of “normal” or higher BMIs to those considered underweight based on their BMI. “We found that those with atypical anorexia lost a similar amount of weight as those with anorexia over a similar time frame before hospitalization,” Dr. Garber says. She adds the subjects with atypical anorexia were just as “severely ill,” and had equally unstable vital signs, including a low heart rate, abnormal lab tests indicating signs of malnutrition, and worse eating disorder-related thoughts and behaviors.

“I struggled with denial and lack of insight into my [disordered] behaviors, especially when I was being praised by the world around me for starving and shrinking my body.” —Shira Rose, fashion blogger and atypical anorexia survivor

These results call into question prior assumptions that weight is the primary marker of malnutrition. “Previous studies suggested that patients with atypical anorexia had experienced more severe weight loss than those with anorexia, leading to the conclusion that massive or chronic weight loss is required to produce signs of malnutrition at a normal weight,” says Dr. Garber. “However, we have demonstrated that this is not true: similar weight losses produce similar medical instabilities regardless of the starting weight.” Basically, a person doesn’t have to be technically underweight to still see serious health consequences from extreme calorie restriction, overexercising, binging and purging, and other dangerous behaviors associated with disordered eating.

It’s critical that anyone experiencing atypical anorexia or anorexia nervosa gets help; anorexia has the highest mortality rate of any other eating disorder. But recognizing and recovering from an eating disorder within a society that values thinness is incredibly difficult. “Nearly all messaging from the public health sector to the medical establishment, to diet culture, to well-meaning friends and family, is that smaller is better,” says Marci Evans, RD, a registered dietitian in Cambridge, Massachusetts who specializes in eating disorders and body image concerns. “Many people have internalized this message from a very young age and that message is reinforced everywhere they turn,” she says, from tabloid headlines glorifying a celebrity’s post-baby weight loss to the rise of popular eating plans like keto and Paleo that restrict entire food groups (which can get into disordered territory for some).

Stories like Rose’s are why Evans says there is an urgent need to challenge attitudes, perceptions, and behaviors towards individuals in bodies that fall outside the societal ideal. “We need to listen to and center those voices of individuals in larger bodies,” she says.  “They will have vital insights into their needs and the solutions that are the most effective.”

It is also essential to support individuals of all shapes and sizes to develop a positive body image. “Historically, researchers studied negative body image as opposed to the ‘how-to’ for cultivating positive body image,” Evans says. “It has only been the past several years that researchers have studied what positive body image is and the characteristics that define it. But the most hopeful area is the development of self-compassion.”

There are a lot of things that contribute to the challenges and struggles of people with anorexia. But hopefully, more education about what the condition is—and that the fact that that there is no one “type” of person who can experience it—will ensure more people get the right help that they need.

If you or someone you know is experiencing an eating disorder, contact the National Eating Disorders Association’s hotline at (800) 931-2237. 

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