A Case of the Bias Against People with Eating Disorders

Public health campaigns and outreach by non-profit organizations such as NEDA and AED have started to educate people about eating disorders in the last two decades. Despite the ongoing confusion and misunderstanding about these illnesses, the work of many dedicated people have led to significant advancements. Eating disorders now receive treatment parity with medical illnesses as biologically-based diseases and are legally mandated to qualify for disability benefits for people on medical leave from work. 

A less tangible benefit from the public outreach is the decrease of bias against people with eating disorders in the academic and professional setting. It has become much more commonplace for people to reveal their illness on school applications, during a semester or to bosses at work without fear of stigma and bias. As a psychiatrist typically coordinating a patient's care, I have become increasingly comfortable suggesting someone be honest and open about their illness with much decreased fear of repercussions based on ignorance and misunderstanding. 

In this environment of growing tolerance and acceptance, I was asked to testify as an expert witness for a patient of mine under review by the New York State Bar committee. In order to provide full disclosure, this patient asked for my support in any way possible after the hearing and offered unqualified support for this blog post as long as her name or personal details were omitted. 

She had passed the Bar exam several years before and had been waiting for review by the committee to assess her fitness to be an attorney because of past symptoms and behaviors directly related to her eating disorder. She has received substantive and ongoing treatment for her illness over the years prior to and since taking the exam with significant benefit and progress. 

Although it is within the reasonable right of the committee to attain professional verification that she has been adequately treated and is stable to be an attorney, the committee proceeded, over several years, to ask for all medical records, obtain many letters from providers repeating the same information and delay the hearing for years for no apparent reason. From all appearances, the committee's ignorance and bias against this person's medical illness contributed to the extensive delay. 

The hearing turned out to be a two day referendum on this woman's character. The committee attacked her and her witnesses as if having an eating disorder were a punishable offense. The members of the committee showed a thorough ignorance of these illnesses and their sequelae and, more concerning, continued to reassert their flawed line of reasoning despite multiple attempts to clarify and educate the committee about the psychological manifestations of eating disorders. Moreover, the committee continued to personally attack this woman based on her illness and placed the onus on her to convince the committee that she can function as an attorney, despite multiple expert witness testimony denying any link between an eating disorder and competent functioning as an attorney. 

As a final insult, one member of the committee commented directly about this person's appearance in the hearing in an attempt to prove she has recovered from her eating disorder. This may be a common misunderstanding for people ignorant of eating disorders, but was personally devastating in this legal context, as anyone with a basic of understanding of eating disorders would know. 

I have written extensively about the difficulty lay people experience trying to understand eating disorders and recovery. It means that public outreach is critical to protect the rights of people with this group of illnesses. However, when the ignorance of a professional committee is combined with arrogance and power, the life and future of someone with an eating disorder is seriously jeopardized solely because of her illness. It's clearly unacceptable for this group of accomplished lawyers to judge the suitability of a potential lawyer with the lack of knowledge about the problem and limited desire to listen to the expert testimony before them. 

This situation is an opportunity for the larger community of those with eating disorders and of professionals to support someone being unfairly punished for her illness. I urge those reading this article to post a comment and gather support for a person who has endured longstanding punishment for her illness. I hope this support can provide more evidence to the committee of their ignorance, bias and judgment and allow this person the career she worked so hard to attain and that has been kept from her for so many years.


Why People Have to Stop Loving their Eating Disorder and Get Well

The term ego syntonic leaves out one psychological component of eating disorders. This term implies that the internal thought process feels like a crucial part of one's identity, but an eating disorder has a dual role in someone's life. It can be a part of identity and simultaneously feel like a separate and individual entity. A person with an eating disorder knows there are parts of themselves separate from the eating disorder but that having the thought process of the illness makes them feel safe, special and whole. 

The eating disorder has two powerful distinct ways to hold onto a person. First, it can reinforce the truths of the illness, thoughts that feel like one's own thoughts: you don't need to eat like other people; you are disgusting and horrible; you cannot trust other people. Second, it can lure the person back by acting like one's best friend: just eat a little more now (and it won't become a binge); I will keep you safe and calm; you're not strong enough; and life will never be more than this eating disorder for you.

So recovery becomes very tricky and painful when it means losing a life philosophy and your best friend at the same time. 

Once someone begins to doubt the truths of the eating disorder and the relationship with it, therapy can become a relationship that helps her challenge the disorder more fully. The person needs to hear over and over again how the eating disorder lies, manipulates and sabotages. The illness only makes someone starved, sick and isolated. The promise of safety and security camouflages the truths of isolation, misery and despair. 

It's infuriating and sad for a person in recovery to face these truths day after day. The repetition of the reality of the eating disorder and their lives unleashes a startling amount of denial and anger and runs the risk of alienating that person from treatment.

At the same time, identifying this reality day after day chips away at the ego syntonic experience of an eating disorder and leaves a wake of anger needed to face the hardship of the daily work of recovery. 

The eating disorder thoughts are then replaced with a series of difficult emotions.

One is regret of years of illness and the denial carefully crafted and protected by the eating disorder. Although sadness about lost time is very real, regret tends to be a bottomless pit the eating disorder uses to cause great despair and then reinforces the illness through learned helplessness. 

Another emotion is anger at the person continually pointing out the reality of the eating disorder, the therapist. If the patient has created a world where no one knows the extent of the illness, the person who does know becomes a threat. The moment that therapy punctures the denial can feel like the therapist's fault, rather than a peek into the true nature of their life. Sharing that reality, rather than blaming it on the messenger, creates a mental framework to challenge the ego syntonicity of the disease. 

Fear is the third important emotion. Typically, this person has little experience in the world without the illusory protection from the eating disorder. So basic facts of daily life seem daunting. This again encourages reliance on the eating disorder and learned helplessness. Understanding the reality that people face fears each day just by getting up and living is important. Also, it's instructive to see that real relationships provide support to handle the stresses of each day in a way that opens up possibility as opposed to the prison created by the eating disorder. There are no right and wrong answers in the world without the eating disorder. Instead life is about trying your best each day and tolerating the events and emotions of being human. 

This understanding of how someone breaks through the philosophy and lies of an eating disorder also explain how friends and family can be supportive. In these relationships, a patient can learn how people can provide support, care and love in ways an eating disorder never can. It's not a family's or friend's role to reinforce the nature of the eating disorder that dominates therapy. Without the structure of a treatment relationship, facing the denial head on only alienates the patient from her life. Consistent care and support continue to remind the person through experience what the eating disorder has taken from her and how much she wants a life free of illness.