When most people think of anorexia, a specific image comes to mind: a young, white, extremely thin girl. But in reality, there are more people struggling with anorexia who aren’t underweight than those who are. Those many millions have what’s called “atypical anorexia,” which clinically means they are at or above a normal weight according to their BMI; atypical anorexia may affect up to 4.9% of people during their lifetime, whereas lifetime prevalence for anorexia is generally estimated to be about 0.6%. The media have recently shed some light on the reality that anorexia affects people of all body sizes—most notably a New York Times Magazine cover story back in November 2022—but stereotypes persist. What’s more, the term “atypical anorexia” often reinforces those stereotypes, ultimately shutting out people in need of treatment.

After being diagnosed with atypical anorexia, Nicky England, a peer mentor at Equip, struggled at first to get proper care. “I was warned by providers that it would be challenging to get insurance coverage for atypical anorexia,” she says. “I experienced providers treating me differently from other patients because I was in a larger body. Many of them reassured me that they weren’t going to let me gain weight, even though gaining weight ended up being a crucial aspect of my recovery.”

In the end, England calls herself “one of the lucky ones” because she was able to get the diagnosis and treatment she needed relatively quickly. But many aren’t so lucky.

What is atypical anorexia?

The term atypical anorexia was introduced in the The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) in 2013 under the category of Other Specified Feeding and Eating Disorders (OSFED). According to the manual, someone with atypical anorexia has all the features of anorexia, including having lost a significant amount of weight, but remains at a weight that’s considered normal or above normal according to their BMI.

Prior to the publication of the DSM-5, anyone meeting this description would have fallen under the no-longer-used EDNOS (Eating Disorders Not Otherwise Specified) umbrella. The OSFED category and the conditions it describes—including atypical anorexia—were meant to create more useful diagnoses and reduce the number of people who got lumped together with a vague catch-all term.

According to Jennifer Derenne, MD, Equip’s VP of Medical Care, introducing the term atypical anorexia likely seemed necessary to many in the field; how else could they define someone who exhibits every other symptom of anorexia but isn’t underweight? “Failure to maintain a minimally normal body weight was considered a hallmark of the illness and a core diagnostic criterion in past editions of the DSM,” says Derenne. “I think there were deeply held beliefs about these core symptoms.”

Why the term “atypical anorexia” can do more harm than good

While at first glance, it may seem useful to have a term for people who have anorexia but aren’t underweight, there are a number of problems with separating out atypical anorexia as its own diagnosis.

People think it's less severe.

Making a distinction between anorexia and atypical anorexia implies that there's a substantive difference between the two, when there really isn’t. “Many people falsely believe that atypical anorexia is somehow less serious than anorexia nervosa,” says England. “But anorexia can be serious and life-threatening regardless of body size.” Derenne agrees, explaining that a person with atypical anorexia has all the same health concerns as someone with anorexia, including malnutrition that can cause damage across all organ systems, leading to serious medical instability and possible death. “I think the danger is that the ‘atypical’ modifier may imply less severity, when we know that isn’t true,” says Derenne.

Research has found that people with atypical anorexia have similar rates of medical complications, and even higher rates of eating disorder-related cognitive disturbances than those with anorexia. Those with atypical anorexia do tend to have lower rates of bone density loss and amenorrhea (loss of one’s period), but study after study has found every other medical and psychological symptom to be comparable. In fact, the American Psychiatric Association released a revised version of the DSM-5, adding the sentence “individuals with atypical anorexia nervosa may experience many of the physiological complications associated with anorexia nervosa.”

It fuels stereotypes and underdiagnosis.

Setting atypical anorexia apart from anorexia perpetuates the idea that only thin people can have anorexia, which leads to underdiagnosis in those who aren’t underweight. “Having a separate diagnosis makes people believe that there’s a difference between anorexia and atypical anorexia when in reality the only thing separating the two is weight stigma,” says England. “Many people hold the idea that those with anorexia are always in smaller bodies, and healthcare providers aren’t as likely to be concerned about restriction in larger-bodied-people.”

It tells people they don't deserve treatment.

The entire notion of atypical anorexia also feeds the insidious eating disorder belief of not being “sick enough” for treatment. Those who are struggling may not seek out help or may even double down on their eating disorder behaviors if they’re told that their body is too big for them to have a real problem. “Patients with eating disorders are often sensitive to feeling as though they’re not sick enough for treatment, and I worry that the ‘atypical' designation reinforces that narrative and makes it more challenging for them to access treatment,” says Derenne. “It’s better for patients to receive a timely diagnosis and early access to evidence-based treatment rather than waiting for them to decline until they meet an official anorexia diagnosis.”

It makes the diagnosis seem rarer than it is.

There’s also the implication that “atypical” means “uncommon,” which, in the case of atypical anorexia at least, couldn’t be further from the truth. “Atypical anorexia is very common,” says Derenne. “In fact, it's likely common than anorexia, though it’s often not identified given that providers may not think about the diagnosis in someone of ‘normal’ weight.” The research supports this idea: studies have shown that the prevalence of atypical anorexia worldwide is higher than the prevalence of anorexia. In one study, 43% of patients hospitalized for eating disorder treatment and in need of refeeding met criteria for atypical anorexia, while another study found that the proportion of eating disorder patients hospitalized for medical instability who were not underweight increased from 8% to 47% over a period of six years.

Is the “atypical anorexia” diagnosis going anywhere?

When asked what she thinks of the term atypical anorexia, England does not mince words: “the atypical anorexia diagnosis should be done away with and the definition of anorexia should not include weight criteria.”

She’s not alone in feeling this way. In a 2022 commentary published in the International Journal of Eating Disorders, Stanford pediatrician Neville Golden argued that the label atypical anorexia nervosa is “confusing and problematic,” noting that it’s been variously used to describe different conditions and that the DSM-5 has no weight or BMI cutoff, nor any guidance on what constitutes “significant” weight loss. The same commentary also calls out the fact that the DSM-5 was published 10 years ago, and since then we’ve learned a great deal about so-called atypical anorexia, including its severity and how common it is. “Reclassifying such individuals into a more inclusive category independent of body weight has the potential to enable more individuals with eating disorders across the weight spectrum to receive the care they need,” the commentary reads.

There’s an ongoing debate as to whether atypical anorexia and anorexia are different conditions or simply the same condition across the weight spectrum. In case it’s not clear, we believe the latter. Some in the field have advocated for a new diagnostic category called “Restrictive Eating Disorders,” which would incorporate both anorexia and atypical anorexia under a single diagnosis, with a low-weight subtype.

Derenne says that as long as the term “atypical anorexia” is in the DSM, it will continue to be used to shape treatment, but she remains hopeful that in the future, parameters around weight will be removed altogether. “Fortunately, people are recognizing that the behaviors associated with anorexia and the medical consequences of those behaviors are concerning and dangerous, even when weight is in the ‘normal’ range,” she says.

England’s personal experience illustrates this growing recognition. “I ended up being so lucky to find fat-positive providers who were able to support me in recovering without shame or judgment and who looked at my diagnosis as only one piece of information about me,” she says. “Finding the right treatment team was critical in providing me a safe environment to work through the challenges that came along with recovery.” We’re hopeful that as awareness continues to increase about the risks of anorexia in bodies of all sizes, providers like England’s will become more common—and that, down the line, we’ll do away with that one unnecessary adjective that keeps so many people from the care they need.

If you think you or a loved one may be struggling with atypical anorexia, you can schedule a consultation to speak with an Equip expert about your treatment options today.