Flawed Diagnostic Criteria Are Another Complication
Being underweight is a requirement in the diagnostic criteria for anorexia nervosa, according to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published by the American Psychiatric Association, Dr. Albers points out.
As a result, providers are less likely to screen people with larger bodies for eating disorders like anorexia, she says.
“Individuals in larger bodies can be engaging in extreme restriction, yet not be classified as having ‘significantly low weight,’ and therefore are unable to receive a diagnosis of anorexia,” Albers says.
But higher-weight individuals can certainly have anorexia, as O’Keefe did. The term “atypical anorexia nervosa” — a subtype of another diagnosis in the DSM-5 called “other specified feeding and eating disorders (OSFED)” — is currently used for those who have the symptoms of anorexia without the low weight component, per research published in the August 2023 issue of Eating Behaviors.
The signs and symptoms of atypical anorexia are very similar to those of anorexia, but without low weight, according to the Eating Recovery Center, a network of eating disorder treatment centers throughout the United States. They can include:
A significant fear of weight gain or being in a larger bodyStrong motivation to change one’s weight, shape, or size, no matter the costDissatisfaction with the appearance of one’s body or a distorted body imageDepression or anxietyMood swings or low self-esteemDifficulty focusing or concentratingFatigueSkipping meals or avoiding eating around other peopleFrequently checking one’s body in mirrors or weighing oneselfAn intense focus on calorie counts or nutrition labelsAvoiding specific foods or food groupsDifficulty regulating emotionsBinge eating as a way to cope with painful emotionsSuicidal thoughts or behaviors
These symptoms can have serious health consequences for anyone at any body size or weight, including people with larger bodies. Behaviors like significant weight loss in a short period of time or severe calorie restriction for an extended time can lead to complications like malnutrition, heart and gastrointestinal problems, and reproductive health issues, among other health risks, according to the Eating Recovery Center.
According to Cynthia Bulik, PhD, a distinguished professor of eating disorders in the department of psychiatry and the founding director of the University of North Carolina Center of Excellence for Eating Disorders in Chapel Hill, the term “restrictive eating disorder” may better capture this profile than “atypical anorexia nervosa.” Dr. Bulik hopes the term gains momentum in the eating disorders field. “Calling anything ‘atypical’ makes it sound like it is not severe enough to be typical,” she says.
Plus, the “atypical anorexia” diagnosis isn’t widely known or used by clinicians and can often be missed as a result, she adds. “This is one of our impetuses for recommending a different name, because that vast majority of people equate anorexia nervosa with low weight, and it is like pushing a boulder uphill to get people to believe that you can have anorexia nervosa at any size,” explains Bulik, who coauthored the aforementioned research published in Eating Behaviors.
The other part of the problem is that these criteria have led many people (including healthcare providers) to assume that people in larger bodies with eating disorders have either bulimia or binge-eating disorder rather than a condition like anorexia.
“Because bulimia and binge-eating disorder are associated with eating larger amounts of food, it is falsely assumed that this must be the behavior that an individual in a larger body is engaging in,” Albers says.
Glorification of Weight Loss Can Overshadow Eating Disorder Warning Signs
Like O’Keefe, many patients may tell their doctor they are trying to lose weight, and their doctors often praise their attempts at weight loss rather than screen for an eating disorder, according to a letter to the editor published in January 2021 in American Family Physician. “They may be encouraged by the provider to ‘keep it up’ until they reach a ‘normal BMI,’” Albers says.
The provider might also check the patient’s weight and not believe they have an eating disorder, or they might present a solution, such as dieting, medication, or weight loss surgery — none of which are solutions to an underlying eating disorder, Albers says.
Many providers rely significantly on weight and body mass index (BMI) — a measure of body weight that categorizes people as being “underweight” or having a “normal weight,” “overweight,” or “obesity” — to determine whether someone is at a healthy weight or could be struggling with an eating disorder, according to Eating Disorder Hope, an organization that provides information and resources to people with eating disorders. The National Institutes of Health started using BMI to try to define a healthy versus unhealthy weight in 1985.
BMI is now known to be flawed for many reasons. One reason is that, although weight and BMI can be useful for some measures of health, they’re often not reliable indicators of whether someone has an eating disorder because the tool is size-based, and eating disorders are defined by behavior, not size, according to research published in the American Medical Association’s Journal of Ethics.
A reliance solely on weight and BMI to rule out a potential eating disorder often leads to diagnostic and treatment delays for people with eating disorders with a higher BMI, per the same research.
That can be due in part to weight bias — stigma against higher-weight individuals as being “lazy” or lacking the self-control to live a healthy lifestyle — that exists in many societal arenas, including healthcare. When clinicians perceive higher-weight people to be losing weight, some may be less inclined to ensure that their weight loss isn’t a result of disordered-eating behaviors, which is why they’re more likely to go unnoticed, according to the aforementioned research.
The eating disorders that higher-weight people most commonly develop are bulimia nervosa (an eating disorder involving both bingeing and purging) and binge-eating disorder (an eating disorder involving chronic and compulsive overeating), according to a review published in July 2018 in Nutrients.
Previous research found that about 42 percent of Americans who had a binge-eating disorder and about 31 percent with bulimia also had obesity (the researchers used this terminology to define larger bodies in the study). Other research showed that those with binge-eating disorder are three to six times more likely to have obesity than those without an eating disorder. And people who are at a higher weight at a younger age are at increased risk for developing an eating disorder, according to a review published in the December 2021 issue of Nutrients.
But these aren’t the only eating disorders that can affect people in larger bodies — they can develop eating disorders characterized by weight loss, too. “The arrows can point in both directions,” says Dr. Bulik.
How to Advocate for Your Recovery (Both in and out of the Doctor’s Office)
It’s important to be your own health advocate. If you’re someone with a larger body who has an eating disorder or suspect you have one, but you’re not sure where to start your diagnosis and recovery journey, here are five expert-recommended tips that can help.
1. Take a Self-Assessment and Show It to Your Doctor
“We really do have to take our healthcare into our own hands,” Bulik says. “Many physicians still only have ‘eating disorders’ on their differential diagnosis when a thin person enters the exam room.”
If you suspect you have binge-eating disorder, for instance, consider assessing yourself with the Binge Eating Disorder Screener-7 (BED-7), a screening tool doctors use to identify people with BED. “Take this instrument to your physician and say, ‘This is me. How can I get help?’” Bulik says. “That type of screening does not yet exist for atypical anorexia nervosa, so people should come armed with information about the diagnosis.”
You can also receive a free hourlong assessment from Project HEAL’s Clinical Assessment Program, or take the Eating Recovery Center’s Eating Disorder Test.
2. Focus on Eating Disorder Recovery, Not Weight Loss
“Weight loss should never be presented as a solution to an eating disorder,” Albers says. “Even if an eating disorder is in remission, attempting weight loss may lead to a reemergence of disordered eating or a full-blown relapse.”
If a provider presents weight loss as a solution, consider asking them if their advice would be the same if the patient had a thin body (if you feel comfortable doing so). “Individuals in larger bodies should be given the same range of treatment options,” Albers says.
You may also want to find another provider in your area, ideally one who is trained in eating disorders and operates from a Health at Every Size or weight-neutral framework, Albers says. Bulik agrees and adds that it’s important to find someone who helps you manage your health at any weight or size.
It’s important to note that treating an eating disorder may result in unintentional weight loss in some cases. For instance, previous research found that after one month of treatment with cognitive behavioral therapy, half the participants were in remission for binge-eating disorder and those who achieved remission also saw significant reductions in BMI compared with those who did not.
3. Dismantle Your Own Fatphobia
Fatphobia is both an internal and external stigma toward higher-weight individuals involving the belief that their weight is their fault or represents a moral shortcoming, according to Boston Medical Center.
Fatphobia can keep people with larger bodies from receiving proper healthcare for several reasons, per Boston Medical Center. These include assumptions that high-weight people cannot be healthy, lack of knowledge among healthcare providers in treating higher-weight patients, and doctor’s office barriers such as the size of exam tables, gowns, and blood pressure cuffs.
O’Keefe believes it’s important to break down any fatphobia you’re holding onto in order to champion your own health and well-being. He suggests seeking out resources that break down the misconceptions many people may have about their bodies due to fatphobia and weight stigma, such as What We Don’t Talk About When We Talk About Fat by Aubrey Gordon, You Have the Right to Remain Fat by Virgie Tovar, and Belly of the Beast: The Politics of Anti-Fatness as Anti-Blackness by Da’Shaun L. Harrison.
“Once you’ve dismantled that fatphobia in yourself, it gives you the tools and the language to start to advocate for yourself as well,” O’Keefe says. For example, you’ll learn how to speak up for yourself in a doctor’s office setting, and if the doctor isn’t receptive, you’ll know you have the power to find another doctor, O’Keefe says.
4. Fill Your Social Media Feed With Body Positivity
“Social media can be a great tool or a destructive space,” O’Keefe says. Be attentive to whether the messages you’re taking in are positive ones. A study published in August 2022 in Eating Behaviors showed that Instagram, for instance, can provide social support and validation to help a person’s recovery, but it also can present harmful and triggering content that might throw recovery off course.
Here’s one way to make sure your social media intake is helping and not hurting: Find a reputable source on Instagram (such as a nonprofit or healthcare center) and see who they’re following and who they’re looking to for thought leadership, O’Keefe suggests. “It’s a great way to cut through the BS and find the people who are dismantling fatphobia and advocating for eating disorder awareness,” he says.
5. Surround Yourself With an Uplifting Community
O’Keefe grew up in poverty and didn’t have access to traditional eating disorder treatment options, such as a dietitian or a licensed therapist, he says. Treatment for eating disorders can be very expensive and often isn’t covered by health insurance, according to Project HEAL.
Instead, he built a community of friends and family members to help him recover.
“I had a boyfriend in high school, and we would go to Taco Bell,” he recalls. “I would get one bean burrito, and he would sit with me for an hour until I finished it. It was my community that got me through.”
If you are struggling with an eating disorder and want to find help, call the toll-free National Association of Anorexia Nervosa and Associated Disorders (ANAD) helpline at 888-375-7767, which is available Monday through Friday from 9 a.m. to 9 p.m., Central Standard Time. If you’re having a mental health crisis and need immediate help, dial 988 to reach the 988 Suicide & Crisis Lifeline.
