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“I might have a little disordered eating, but I don’t think it’s an eating disorder”(when it is an eating disorder). "I throw up sometimes to manage my weight, but it's not a big deal." These types of comments often come up in therapy and in common conversations.

A 2023 review by Miskovic-Wheatley and colleagues synthesized a decade's worth of literature and provided an overview of what's documented with eating disorders. Yet, as someone who has interacted with people with these illnesses my whole life and professionally treated people with eating disorders for over 15 years, I’ve come to suspect that real-life statistics are probably quite different than what studies can document. Here’s why.

Incidence rates

When someone doesn’t know or share that they have an eating disorder, they can’t be included. For example, a diet for weight loss or an attempt to improve health via nutrition often precedes an eating disorder's development. Yet the person may not know they developed an actual clinical disorder. Instead, they often think they need to try harder, are not doing things "right," or "lack discipline."

Especially in Western societies, health and eating practices can become belief systems similar to religions. Health commandments exist, and people derive morality or character statuses from them. For example, people will often judge or pity others with a higher weight or fatness or who don't "look" healthy. Whereas others with thinness tend to receive admiration for "getting away with" eating something so "bad." And people offer praise and honor to others for their "discipline" in not eating certain foods or the hours they exercise.

So when does a person stop cheering for self or others and replace that with concern? Seek help? Pursue a diagnosis? It may be never—even if the “good” practices changed to illness compulsions.

When someone doesn’t have access to treatment or help, they can’t be included. Incidence indicates “new cases” in the population. People who don’t have access to mental or medical healthcare won’t be included in statistics commonly quoted.

When someone doesn’t tell their provider, they can’t be included. For example, a recent qualitative study (Patmore & Farber, 2023) revealed that even people in therapy will avoid or lie to their therapists about eating or body image issues and eating disorders. My article, “Why So Many People Lie to Their Therapists,” provides a more thorough summary. The secrecy surrounding eating and body image issues could also affect incidence rates.

Medical and mental health providers may not spot eating issues or disorders. Surprisingly, health providers are not typically trained in eating and body image issues (Spotts-De Lazzer & Muhlheim, 2016). Educational tracks for therapists, doctors, and even dietitians may include zero minutes dedicated to eating disorders.

Granted, no one can know what they don't know. Yet I have seen practitioners compliment abrupt weight loss when they should instead express concern and run tests. Professionals can fail to notice eating disorders.

Eating disorder screenings generally favor “female” presentations. Tools can miss more masculine presentations (e.g., ripped chest vs. thigh gap obsessions). So even when looking for these diseases, they may not be found.

The public’s perception of eating disorders needs repair! I recently watched an episode of the documentary series Diagnosis. In it, people worldwide respond to assist with tricky medical issues. A person seemed to have rumination disorder, which is an eating disorder, and the responses online from even medical people pained me—trivializing eating disorders, blaming the patient, and mocking them. With so much invalidation from society and professionals, some people may avoid these disorders altogether.

Recovery rates

The field doesn’t yet have an agreed-on definition of remission or recovery. Of the 1,300+ studies Miskovic-Wheatley and colleagues reviewed, just under 9 percent focused on outcomes (2023). Remission and recovery rates (the literature often used the words interchangeably) look like about 50 percent regardless of the specific eating disorder diagnosis. However, the authors pointed out the following issues: “lack of consensus on definitions of remission, recovery and relapse” and “widely varying treatment protocols and research methodologies.”

A position paper, “International Consensus on Patient-Centered Outcomes in Eating Disorders,” published on September 25, 2023, may help straighten that out—from here forward. Twenty-four international experts from professional and lived-experience backgrounds collaborated. “Final recommendations suggest outcomes should be tracked across four domains: eating disorder behaviors and cognitions, physical health, co-occurring mental health conditions, and quality of life and social functioning." Hopefully, this can help in the future.

Effective treatment is happening but probably can’t be tested or included in rigorous studies. Why? Treatment often calls for intense personalization. Though the start of the disorder is like a switch that flips on, the ways the disease weaves into a person's life, thoughts, coping, behaviors, values, and fears, for example, are uniquely individual. Even though the common outcome goal is improvement and healing (e.g., recovery and remission), the paths there may not be homogenous beyond a few base things.

In real life, I've met many people who identify as "fully recovered" or "in recovery.” I highly doubt they have been included in the research that has led us to the rates commonly quoted.

Bottom line

There is a lot that the current statistics and studies cannot catch. And there is always room and reason for hope—no matter what the numbers say.

If you are wondering whether you or someone you love has shifted from good and healthy eating or exercise practices to compelled and obsessive, please seek clarification and help from a professional. People you might reach out to. Verify their expertise or experience first. Not all therapists have training in eating, body image, or eating disorder, and it can be difficult to tease out what's genuinely healthy vs. unhealthy behaviors and beliefs.