Eating disorders are underdiagnosed. Stereotypes play a big role. | Nutrition By Carrie

It’s estimated that 9% of Americans* will develop an eating disorder in their lifetime, but a fraction of those will receive a diagnosis, and even fewer will receive effective treatment. Why is it so hard to diagnose an eating disorder? Eating disorder stereotypes are one obstacle.

*This is an estimate, and is likely higher, again, because of the problem of missed diagnoses.

When most people think “eating disorder,” they think of a severely underweight young, middle-class or higher female. There’s even an acronym for that: SWAG (skinny, white, affluent girls). The truth is that no demographic is immune to eating disorders. People of every gender, age, race, ethnicity and socioeconomic status can be genetically predisposed to eating disorders and vulnerable to societal and environmental factors that may trigger that genetic susceptibility and turn it into an actual eating disorder.

But pervasive myths about who gets eating disorders and who doesn’t means many people are more likely to go undiagnosed, and untreated. Let’s look at midlife women as an example.

A 2012 study estimated that 13 percent of American woman age 50 and older have eating disorder symptoms, higher than the rate of breast cancer. A 2017 study found that about 3.5 percent of women over 40 have a diagnosable eating disorder, yet most are not receiving treatment. Data from STRIPED (Strategic Training Initiative for the Prevention of Eating Disorders), indicates that among females suffering from an eating disorder in 2018-2019, 34% were age 40 and above, and 20% were ages 40-59, encompassing the menopausal years.

And what about males? Well, they account for at least 10 percent of diagnosed cases of eating disorders, but because men are less likely to get professional help, the actual percentage could be 25 to 40 percent.

Bias in eating disorder research

Unfortunately, the research we have on eating disorders mostly tracks with the stereotypes. There’s an overall deficit of research on anyone who’s not a young, white, cis-hetero, affluent female. There’s also a lack of research in rural areas. Because the stereotype says those SWAGs live in suburbia or in urban areas.

For example, a 2019 study found that non-white American adolescents are more likely to engage in disordered eating behaviors than their white counterparts, but you wouldn’t know that by looking at the overall body of eating disorder research. In fact, based on the research, you would think that Black people only struggle with binge eating disorder.

A 2022 study found that in eating disorder research that actually reports the race of study participants, white participants accounted for about 70% of participants. Hispanic participants made up about 10%, and other races and ethnicities made up less than 5% each.

Lack of research on eating disorders in diverse or marginalized populations means fewer diagnoses. You have to name a problem to see a problem. Indeed, a 2018 study found that people of color with eating disorders are half as likely to be diagnosed or receive treatment as white people — and those numbers are already dismal. A 2023 study found that even when youth of color do receive a diagnosis and a treatment recommendation, they’re half as likely as white youth to receive that treatment.

One problem is that most eating disorder researchers and treatment providers are white, female and cisgender — and most leadership is white, male and cisgender. So providers largely fit this stereotype, people who are diagnosed fit the stereotype, research perpetuates the stereotype, and it just snowballs.

Also, while societal and media pressures to conform to an unrealistic body type can be a major trigger for developing an eating disorder, in Black and Brown communities, the pressure to conform may be less about body image and more about trying to conform in a world where you are unsafe — especially if you are also female and/or LGBTQIA+ and/or neurodivergent and/or physically disabled.

Weight stigma and eating disorders

Weight stigma unfortunately affects both diagnosis of eating disorders — because someone doesn’t “look the part — and treatment, because of assumptions and beliefs about what a “healthy weight” looks like.

For example, in some eating disorder treatment centers, there is a tendency to aim for the “lowest healthy body weight” in patients who are actually underweight, even if a higher weight range is what’s needed for full recovery.

Looking at diagnosis, individuals with higher body weight are more than twice as likely to engaging in disordered eating behaviors, compared with “normal” weight individuals, they are half as likely to receive a clinical diagnosis of an eating disorder, compared with individuals who are “normal” weight or underweight.

For example, many people with anorexia have what’s unfortunately called “atypical” anorexia. (Unfortunate, because it’s more typical than atypical.) The only thing that’s atypical about it is that people struggling with it don’t meet one aspect of the criteria for anorexia: weight. They may not be “underweight,” but they are still restricting food intake to a harmful degree, still have an intense fear of weight gain, are still disturbed by their body weight or shape and/or have self-worth that’s influenced by body weight or shape.

Fewer than 6% of people with an eating disorder are medically underweight. But if you’re in a higher weight body and seek help for eating disorder symptoms, you may be falsely diagnosed. I know there have been larger bodied individuals with atypical anorexia who needed a higher level of care (i.e., more than just outpatient care) who were put into group sessions for binge eating disorder because they didn’t “look” like the other anorexia patients. Or, they were included with the anorexia group, but they weren’t allowed to eat what the other patients were eating — because they were fat.

“Normalizing” disordered eating behaviors

Related to this, there is a stunning similarity between dieting behaviors — including tracking body weight, measuring food portions, counting calories or macros, avoiding “unhealthy” foods, exercising for hours a day, complaining about our thighs or other body parts — and eating disorder behaviors. So when we see someone engaging in these behaviors, unless they are alarmingly thin, it’s common to assume they’re “just dieting.”

I’ve heard it argued that, collectively, we have a “national eating disorder,” in part because we prescribe (or at least encourage) behaviors in people with fat or even average bodies that we would pathologize in treat in people with bodies that fit the stereotype for a restrictive eating disorder.

Body dissatisfaction is so common among women, and such a frequent talking point in casual conversation, that researchers have called it “normative discontent.” Our body dissatisfaction has become normalized.

This is effed up.

An eating disorder psychologist I interviewed for an article a few years ago told me about one of her former patients, a woman in her early 40s who had been dieting since her parents sent her to Weight Watchers during puberty. She struggled with — and overcame — anorexia in college, but when she couldn’t lose weight after her second pregnancy, she started purging and excessively exercising.

Eventually, she realized her behavior was out of control, even though her weight wasn’t low enough to raise alarms. She finally went to her ObGyn and planned to tell him her concerns — because she trusted him. What she was not ready for was when her doctor walked into the room and said, “How does your husband like your new body?”

This is one of the reasons that we shouldn’t automatically compliment weight loss!

Mental health stigma

Eating disorders are mental health disorders with (sometimes fatal) medical complications, such as seizures, gastrointestinal disorders, loss of fertility, osteoporosis, failure to reach full height, muscle cramps and weakness, heart palpitations, cardiac arrhythmia, cardiac arrest, heart failure, coma and death.

Eating disorders are responsible for more deaths than any psychiatric illness other than opiate addiction. Every 52 minutes, someone dies as a direct consequence of an eating disorder.

On their own, eating disorders are a mental (or psychiatric) illness. On top of that, many people with eating disorders also struggle with other mental health conditions, such as anxiety, depression, or obsessive-compulsive disorder. Unfortunately, there’s a lot of stigma about mental health, especially among certain demographics.

Stigma around mental illness is an issue in some diverse racial and ethnic communities, whether because emotional restraint and avoiding shame are valued, or because of a distrust of the mental healthcare system. Unfortunately, intergenerational trauma and/or stress related to other types of stigma and discrimination can increase the risk of poor mental health, including eating disorders.

Even among more “mainstream” populations, individual families may stigmatize mental health concerns because of “that one relative” who was “crazy.” There may be a “buck up and get over it” mentality, because after all, your problem is “all in your head.” The limited research on eating disorders in rural populations suggests that stigma about mental health is one barrier to people reaching out for help and possibly getting the diagnosis that could open the door to treatment.

Basically, silence about mental health struggles due to stigma or shame is a major obstacle to diagnosis, treatment, and healing.

An eating disorder case study

I want to tell a story of someone I know, I’ll call her Jill, who I recently learned has anorexia. (I’m changing some of the identifying details, but the key points are unchanged.) I’ve known this woman since she was an adolescent, and she was always genetically thin. But shortly after she got married, she became increasingly thin. I learned secondhand that she had hyperthyroidism, which indeed can cause weight loss (as well as symptoms such as very dry skin, which I also observed).

She remained very thin during her pregnancies, eventually reaching the point where her face was gaunt and she felt like a skeleton when hugging her. I often thought that her hyperthyroidism wasn’t being medically managed very well, but by that point I only saw her once or twice a year at most, and no one asked for my opinion. She would sometimes mention that she often got comments (and I presume some of these comments might have been from strangers) that she needed to eat more. “I eat! I love food,” she would say. Indeed, she would talk about some amazing taco place her family went to, or this great bakery that has amazing pastries.

She’s now in her early 40s, and I recently learned that she had just come out of treatment for anorexia. I don’t know what level of treatment, but I know she wasn’t living at home during that time.

Clearly her husband and immediate family didn’t see the signs (despite her extremely low body weight), or didn’t want to see the signs. Clearly her doctor didn’t recognize that her hyperthyroidism wasn’t responsible for that much weight loss. (Of course, many doctors are not skilled in recognizing eating disorders, let alone treating them.) And when someone is hiding an eating disorder, they can talk a good game. (“I eat!”)

I had to have a hard talk with Jill’s aunt and uncle, who I see often. It was through them that I learned about Jill’s eating disorder. They were confused about why Jill’s mother instructed them to avoid certain types of talk (read: diet talk) when they were sharing a meal with Jill. “She needs to just get over it and eat,” Jill’s uncle said.

I stifled a sigh and explained that anorexia is a mental illness with the risk of dangerous medical complications, and that Jill is lucky that she hadn’t experienced them. I said that there’s no “just getting over” a mental illness, and that when someone’s brain is undernourished, it’s difficult if not impossible to do the cognitive work to heal from the mental illness. I explained the concept of the “eating disorder brain” as an almost separate entity that is not rational but feels rational to the person struggling with the eating disorder. I explained how things like diet talk or talking about splitting an entrée because it’s “too much” food could trigger the eating disorder brain, and how, even years after “recovering” from an eating disorder, periods of increased stress or life transitions (such as menopause) can wake up the eating disorder brain and potentially the eating disorder behaviors.

So back to the original question: Why are eating disorders so underdiagnosed? There’s no one easy answer, but until we as individuals and a society shed a lot of stigma and stereotypes, and stop rewarding the pursuit of thinness, I fear we won’t make nearly enough progress.

Hi, I’m Carrie Dennett, MPH, RDN, a weight-inclusive registered dietitian, nutrition therapist and body image counselor. I help adults of all ages, shapes, sizes and genders who want to break free from disordered eating or chronic dieting, learn how to manage IBS symptoms with food, or improve their nutrition and lifestyle habits to help manage a current health concern or simply support their overall health and well-being. This post is for informational purposes only and does not constitute individualized nutrition or medical advice.

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