Why Don’t People with Eating Disorders Want to See Doctors

A common concern for people with eating disorders, especially when it’s chronic, is the lack of doctors knowledgeable about how to treat these illnesses. Many people even opt out of medical care—unless it’s urgent—because of negative experiences with doctors.

Why are there so few doctors who know how to treat people with eating disorders?

First, doctors learn to practice medicine in hospital settings, both inpatient and outpatient. For the most part, hospitals don’t offer adequate, and sometimes any, treatment for eating disorders. Instead, people tend to go to various treatment centers run by non-medical clinicians or, increasingly, private equity companies. Doctors may consult in these settings but only as needed.

The result is that few senior doctors in hospital settings know how to treat eating disorders so trainees aren’t exposed to situations to help them learn about these illnesses. In any field, doctors will see people with eating disorders but won’t have enough structure or learning opportunities to know how treat these people effectively. After finishing training, young doctors are likely to not want to treat eating disorders due to lack of knowledge and experience.

The second issue is that eating disorders are the rare psychiatric condition with serious and potentially life threatening medical consequences. When doctors see people who are quite ill but don’t have the knowledge to treat them, their first instinct is to refer them to another doctor. The result is that people with eating disorders see lots of doctors without much benefit.

The third issue is the institutionalized fat phobia in medicine. Doctors across the board believe being fat is the cause of many medical illnesses despite the lack of evidence. Accordingly, doctors will either praise underweight people with eating disorders or focus on weight loss for people with higher weight and an eating disorder. The weight bias often leads to both ignorant and often hurtful comments from doctors who not only can’t treat eating disorders but say things that make the illness worse.

Nowhere in medicine is there an opportunity for doctors to learn about eating disorders unless they seek the knowledge and experience on their own. The disconnect from hospital-based medicine, where young doctors learn, and the outpatient world where most doctors practice means this pattern doesn’t seem to be changing any time soon. The inherent bias in medicine allows doctors to justify ignorant and cruel comments to patients with eating disorders, who often decide instead not to seek medical care. Clearly, these options for people with eating disorders are completely unacceptable.

To the Contrary, it is About the Food Too

When I first started treating people with eating disorders, the novel and profound aphorism about treatment was simple: “it’s not about the food.”

Over time the effects of this saying grew into many powerful and effective facets of treatment. People with eating disorders felt more understood, and the opportunities for treatment with clinicians willing to listen and try to understand their experience grew exponentially.

Now, the tides have turned. To a large extent, eating disorder treatment has forgotten that recovery has to be about the food too.

I don’t mean to imply that dietitians aren’t doing their job or that treatment programs and teams ignore meal plans, recovery records or physical health progress. Just checking off the boxes for eating, weight and lab tests doesn’t qualify for the needed attention on food thoughts and behaviors.

One description of what is needed is called “food therapy.” This term coined by many dietitians over years reflects the need to combine therapeutic interventions with going over food logs at the same time.

Connecting emotions, thoughts and experiences with food day by day enables people in recovery to become acutely aware of how their eating disorder functions.

After even a few weeks of going over food logs, a person in recovery will be able to predict how certain behaviors early in the day or even the night before will translate into eating disorder behaviors. This ability will make it possible to foresee difficult periods and find ways to circumvent these behaviors either through actions, grounding techniques or working through feelings.

Only with food therapy will people in recovery be able to understand ways the eating disorder works in their lives. They’ll be able to sort through new ways to cope with difficult situations or emotions, navigate relationships and feel more able to engage with the world. Adding other modalities of therapy, referred to many times in this blog, makes full recovery possible.

The expansion of treatment and access to care that has made recovery possible for so many people with eating disorders has been transformative. The focus on food and meals needs to remain relevant and central to treatment to give people the best chance to get well.

Some Thoughts About the Future of Eating Disorder Treatment

The last two posts point out where the advancement in eating disorder treatment occurs at the moment: social media and, inadvertently, the pharmaceutical industry.

The clinical establishment—medicine and psychology—have had little true impact on new roads for recovery. Treatment centers rely on old approaches to care, and the larger companies now running most of the residential options focus on turnover and profit.

Any progress is driven by frustrated and incredulous people with eating disorders or their families and clinicians willing to use any tools available to improve care.

There are many reasons why institutional interest in eating disorders care is so limited, but, critically, financial and medical pressures just don’t merit improved outcomes. At hand, the question is what the current forces for better treatment find most compelling.

Psychological treatment of eating disorders has benefit but limited, very slow and not effective for enough people with these disorders. Seeing eating disorders solely through the psychological lens is necessary but insufficient.

Medicine remains wary of these illnesses. Some doctors who specialize in nutrition sciences (and there are very few) can help add knowledge about our metabolism to treatment options. Dietitians truly specialized in eating disorders, of which there are also few, can do something similar through a clinical lens. Other specialists such as endocrinologists or rheumatologists don’t have the background or knowledge to help develop new ways to consider eating disorder care. They can add their own knowledge but not in a precise way to treat eating disorders.

Laypeople very concerned about the lack of progress focus on the overlap between eating disorders and other illnesses. Clinicians increasingly see more cases of autoimmune disease, dysfunction of the autonomic nervous system, Mast Cell Activation syndrome and Ehlers Danlos syndrome, among others.

The suggestion of so many overlapping medical illnesses suggests a broader spectrum of eating disorders with various causal components, many of which might be medical.

Granted, any long term change in eating behavior merits psychological treatment as well to alter ingrained patterns; however, concomitant medical interventions aimed at a person’s specific medical concerns might truly speed up care and recovery.

The future of treatment demands more attention to the figure out the medical and psychiatric illnesses that are part of an entrenched eating disorder. More external pressure on the treatment community can push clinicians to see why more progress is possible and essential.

GLP-1 Medications (Ozempic et al.) Indicate a Possible Medical Cause for Eating Disorders

One intriguing effect of the GLP-1 agonists is the decrease or disappearance of “food noise,” coined last year on social media after the explosion of the use of these medications.

It is not a clinical term. The simplest description of food noise is ruminative thoughts about food. This noise can vary widely from the struggle to choose what to eat, consistent thoughts about food much of the day to constant obsessions about food and weight.

A common effect of the GLP-1’s is to decrease thoughts about food—not an obvious result of a class of medications intended to alter the gastrointestinal hormonal system.

Although it’s clear that hunger, fullness and digestion would change after taking these medications, similar alterations in thought patterns was not to be expected.

For people with eating disorders, the GLP-1’s can have a similar effect of changing food thought patterns. This unexpected benefit may very well be beneficial for recovery and also may open doors to new ways to conceive of these illnesses.

Just as interesting, many people with eating disorders do not notice any change in food thoughts with these medications—another clue that eating disorders are likely a group of similar illnesses rather than just one disorder.

The cognitive effect of the GLP-1’s imply that some eating disorders might be related to dysfunction in the GI hormonal system, which then causes symptoms around consistent eating and digestion. Other eating disorders may not be related to this system.

However, the new medications—the first of many similar drugs to come—are likely a much less nuanced approach to the GI hormonal system than anyone with an eating disorder would need. The risks of weight loss, slowed gastrointestinal motility, impaired digestion and potential broad hormonal changes are very risky for people with eating disorders.

GLP-1’s can be used off label for specific eating disorders now only if the clinician takes into account the underlying risks since this class of medications is still new.

At this point, I remain hesitant to use these medications broadly for people with eating disorders. The two situations where they have been helpful are intractable binge eating disorders and metabolic dysfunction from chronic eating disorders. Over time, there is a high likelihood that the GLP-1’s will shed light on the cause of some eating disorders and new treatment directions.

Treating eating disorders as both psychiatric and medical in nature may very well be the future of eating disorder treatment.