A few days ago, I talked to a mentor and brought up my anorexia recovery journey. Using my voice after years of suffering in silence has been instrumental in releasing myself from the inner torment while trying to create purpose from the pain. When I mentioned my struggle with anorexia, the mentor responded, “How are you doing, now?” followed by one of my most dreaded comments: “I mean … You don’t look anorexic.”

No! The first question was great: Thank you for asking. The second comment? A tremendous “trigger” that can so frequently lead a person suffering from an eating disorder into a spiral and a comment that exposes a stereotype about eating disorders needs to be corrected.

While eating disorder “triggers” are ubiquitous in our diet culture-saturated, weight-obsessed society, the mentor’s comment is one of the most harmful and represents much more than just a trigger. The comment exposes the prevalent misconception that one should be able to determine if a person has an eating disorder and the depths of their suffering just by looking at them. And the belief creates the perception that if the person looks “fine,” they must not be suffering. This belief is dangerous for those living with eating disorders.

First, let’s get this straight: Eating disorders are mental health disorders. A person can look like absolutely anything and suffer from an eating disorder.

It’s worth repeating: A person can look like absolutely anything and suffer from an eating disorder.

The misconception that you can tell if someone has an eating disorder by looking at them creates similar issues that dependency on weight or BMI based criteria for the diagnosis of eating disorders create (See previous article: “Eating disorders thrive in secrecy, so let’s talk about it. Starting with BMI.”) Appearance-based assessment often contributes to detrimental consequences for the person with an eating disorder including invalidation, prolonged suffering, delays in diagnosis, barriers to care, and — for many — it may lead to never getting help and support for a mental health disorder that has such devastating consequences on a person’s quality of life and overall health.

I am hopeful that prompting this conversation will empower more to speak up and share their voice to surface a greater breadth of perspective on this issue, and I will start by sharing the perspective from my journey. For me, at the beginning stages of anorexia and many stages of my recovery journey, I have looked quite “healthy” — even when deep in the grasp of anorexia rules and behaviors. My behaviors started at a higher end of the BMI scale and were applauded until I drove myself into a medically compromised state. Had my appearance or weight never been used to determine if and how deeply I struggled with a restrictive eating disorder, I could have gotten access to care much sooner when the symptoms had not yet become ingrained behaviors and completely taken over my life.

Further, I believe that health care and societal misperceptions on what an eating disorder should look like have played deeply into a type of “imposter syndrome” that many patients with eating disorders experience. While imposter syndrome is generally understood in other contexts, I mention it in the context of eating disorders as many patients never think that they are “sick enough” and feel that they are an imposter that is unworthy of treatment. This was true for me in my journey.

Are the thoughts rational? Nope. But eating disorders are notorious for hijacking the brain with irrational thoughts that sound like solid truth to the person living with the eating disorder. And suppose society tells the person that they don’t “look” sick. In that case, the inappropriate comments may potentiate the inner dialogue for the person living with the eating disorder that tells them that they are unworthy and convinces them that they must not be sick despite being completely consumed in eating disorder thoughts and behaviors which then may delay or reduce the chances they will seek treatment.

When we create a stereotype about eating disorders and what they should “look” like, we are creating missed opportunities for earlier diagnoses and barriers to care for patients that already experience difficulty asking for help in the first place. We must work to reduce barriers to care as much as possible and be on the lookout for signs of eating disorder symptoms in every patient. A good place to start would be with universal acceptance that eating disorders are mental health illnesses that do not have a “look.”

And while not all triggers can be avoided, please refrain from telling an eating disorder sufferer they don’t “look” sick. The eating disorder mind is not rational, so the interpretation of comments based on “looks” is often quite destructive. The comments are inappropriate given the nature of the illnesses as described. If you encounter a patient expressing concerns and symptoms that sound like an eating disorder, validate their struggle and direct the person to care, preferably from an eating disorder-trained team.

Jillian Rigert is an oral medicine specialist and radiation oncology research fellow.

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