"Getting It" Part 1

When I first started learning how to treat people with eating disorders, I was a psychiatry resident at UCLA. A colleague and I were the therapists in a weekly group therapy session as part of an intensive outpatient program. The age range of the women in the group was 18 to forties. Calling us the therapists was generous. We learned as much from the patients, if not more, as they did from us. 

I have been thinking about this group lately, more than for some time. In particular, when asked why I treat people with eating disorders, I speak about this group as the initial experience that began a quest to understand and help people with these illnesses. But recently, I have come to wonder whether I actually picked this specialty or, much as people find themselves trapped in an eating disorder, it picked me. 

As an impressionable and nervous resident, participating in this group therapy was a formative professional experience. After a few months, the patients who were more experienced in treatment settings had had sufficient time to vet the new trainees and determine that I, in eating disorder program lingo, "got it."

No stamp of approval was more potent. I had been accepted as a member of the club. I was now deemed worthy as a therapist. I had magically cracked some sort of code of empathy. I understood the complexity and confusion of having an eating disorder. The concept of not eating or of throwing up one's food, in the context of a complex life, made sense. Somehow, I had crossed over and now was one of them. 

I wasn't aware of any of this at the time but instead felt a heady, out-of-body sense that something significant has changed. It felt as if I had something special and had a responsibility to do something with it. 

Interestingly, my new status spread from patients to the clinicians who ran the program. I became one of their chosen residents and, over time, was invited into a small cohort of trainees considered capable of working with people with eating disorders.

The rest of the story is less interesting except that I have devoted my career to treating people with eating disorders. The effect of that initial group was to initiate me into the mindset and confusion of an eating disorder and to teach me how to use my own kindness, empathy and compassion to help a cohort of people left with limited treatment options, even in New York City, perhaps the most therapized city in the world. 

I have since learned hat the concept of "getting it" is central to most programs and patients alike. It has many uses like normalizing the confusion of the disorder, helping someone so alone feel a part of something and serving as shorthand for a therapist to trust. But the term can also signify the recalcitrant nature of the illness and the powerlessness the eating disorder thoughts brutally reinforce. 

In the next post, I will address the concept of "getting it" more carefully. Years after understanding its potent effect on me, I am curious to see more clearly the true meaning of this term.

The Challenges of Medical Treatment for People with Eating Disorders

There are pluses and minuses to classifying eating disorders as psychiatric diseases. Although the mental component is clear, managing an eating disorder is primarily a medical issue. The longstanding effects of starvation, binging, purging and other compensatory behaviors like laxative abuse or excessive exercise lead to a host of chronic medical conditions that need regular attention to limit the damage of an eating disorder. The confusion around classification is palpable, and too often the medical consequences of these illnesses remain inadequately treated. 

The central psychological aspect of an eating disorder is an aberration in determining hunger and fullness leading to very erratic eating patterns that follow arbitrary rules instead of the body's needs. The thought processes that underlie the illness can range from the fear of gaining weight and self-loathing to seeing food as terrifying, unnecessary or harmful. These thoughts generally follow the initial change in behaviors around food and become fixed as the behaviors become more fully established. Once these new patterns are set, they become the new norm and exceedingly difficult to change. 

While treatment focuses on the therapeutic attempts to alter the eating disorder patterns, the person endures long stretches of starvation or traumatic events such as binging, purging or laxative use. The emotional and psychological effects of these behaviors biologically reinforce the eating disorder patterns. Starving begets more starving as the eating disorder behaviors are reinforced when the body's metabolism adjusts to the lack of food, binging more binging as compulsive behaviors create a cycle of thoughts and actions.

More importantly, months or years of these behaviors cause significant damage to the body that require medical attention. During the difficult period of recovery, management of these medical issues is critical for long term health and increases the likelihood of full recovery. 

There is a basic fact about medical treatment for people with eating disorders: medical training does not equip physicians with the information needed to treat these illnesses. Teaching the medical management of starvation comes up in only two circumstances: distant poor countries and end-stage cancer.

Chronic starvation in the western world is largely considered impossible while obesity instead catches medical interest. Binging, purging, laxative abuse and other eating disorder behaviors are not at all a part of medical training. In fact, all of these behaviors, rather than being seen as symptoms of an illness, are instead considered personal choices of the patient. The effect is to blame the patient and ignore the medical consequences. Adequate treatment is far from a reality for most people with eating disorders.

Viewing eating disorders as a medical illness would increase the likelihood that doctors learn how to treat the medical consequences of these illnesses. Too often doctors overlook serious medical issues for these patients and instead reinforce two concepts: they are healthy and they just need to choose to eat. These two messages only make patients less likely to continue their path to recovery. The real question is how to educate physicians about diagnosis and treatment of the medical effects of eating disorders. 

Bridging Two Worlds: A Path Between the World of an Eating Disorder and Freedom

Living in the shadow of an eating disorder is a very foreign place. The laws that govern that world, the ways decisions are made and the natural flow of events and relationships are all very different from the world everyone else populates.

But this fact is not clear to people with eating disorders, often for a long time in recovery and for a very specific reason. The combination of self-awareness and our limitations of empathy make humans preternaturally self-absorbed beings. Thus, we humans have a natural tendency to see our own perspective as reflective of everyone's view of life. Although this is clearly false, it's hard to remember that in day-to-day life. 

After living with an eating disorder for some time, it similarly becomes hard to remember that most people don't live by the rules of this illness. Freedom to choose their food is a basic fact of life for everyone else. 

The realization that life without an eating disorder means entering an entirely new world is often shocking for people in recovery. It takes time to understand that entering this new world comes with a host of new rules, most of which do not revolve around food. An eating disorder creates a very rigid system of decision making in life that limits many aspects of what everyone else sees as relatively free: food, friendships, relationships, emotions, self-care and self-determination. Eating disorders restrict not just food but life. 

That restriction is terribly limiting but also provides security from the overwhelmingly unpredictable and seemingly dangerous world. People typically find that they don't have the personal skills to function in the world without the eating disorder clearly directing the way. After the shock of this discovery, there is a moment of panic followed by a steep learning curve about life. 

Although many people use this sensibility to describe an eating disorder as a lifestyle choice, this seems largely misguided. It appears to be better described as a crutch. The eating disorder may make navigating life a bit easier on the surface, but it severely curtails possibility and opportunity to grow, connect and love, essential qualities that makes life full and whole. 

What sparks the opening of a window into the world without an eating disorder is almost invariably a strong, personal connection. The eating disorder blinds the person from seeing and believing that real connection can provide solace from life's challenges and meaning to daily life. The inherent isolation leads people to present the world a shell of who they are. The jolt of a connection typically allows people to remember past experiences of connection and trigger the universal yearning to be understood and heard. 

But here lies the paradox. It's so hard to be truly heard while living in a foreign land. It feels almost impossible to explain what it's like to live dominated by the eating disorder to someone who's never visited this strange place. Once that person in recovery begins to understand the world without an eating disorder, it becomes easier to explain the hell of the world of the eating disorder. The opportunities to connect with others are revealed, and a path to freedom opens.

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.

Why People Love their Eating Disorder

Unlike most psychiatric illnesses, and most medical ones too, eating disorders are ego syntonic, a psychological term which means that the central thoughts of the disorder feel right and good, something crucial to one's ego. Based on my recent posts about the harsh thoughts associated with eating disorders, this idea may seem contradictory, but the negativity of the thoughts only become clear once someone starts recovery. Before that, as long as the person obeys the thoughts, the disorder makes a confusing and scary world very calm and peaceful, even as the illness destroys any chance at living a full life. 

It's hard for most people to understand how an illness can feel good, and therein lies much of the public confusion about eating disorders. 

The evidence abounds for this inherent trait of eating disorders: websites extolling the virtues and successes of having an eating disorder, the misguided envy of many adolescents of their peers with anorexia or bulimia, and the tenacious grip the person maintains on her eating disorder as a lifeline to safety. And that is just to name a few. 

Unfortunately, the nomenclature for eating disorders largely ignores this critical component of this group of illnesses. The list of symptoms focuses on restricting food, binging and purging with only a minimal reference to the powerful attachment to the illness and the lack of insight into the severity of one's impairment. 

Focusing on the eating symptoms themselves remains mystifying and intriguing to laypeople. The urge to resist eating and use compensatory behaviors to avoid digesting food masquerades either as a successful diet choice or completely perplexing behavior to people ignorant about these illnesses. The vast majority of available knowledge omits the intense connection between the ill and her disease, thus ignoring the central reason people cling desperately to their illness and the resulting difficulty of recovery. 

So the struggle between the afflicted person and her family and friends stays focused on the food. The struggle between external pressures to eat cannot directly compete with the powerful personal connection to the illness. Any successful intervention has to challenge this connection and reveal the lies that sustain it, not just convince the person to eat dinner. 

The calm and peace that comes with feeling together and close to the illness stems from a web of lies. The eating disorder limits personal life significantly. Although some people can enjoy some success, especially in the academic or professional arena, the end result is a severely limited existence. The opportunity for close relationships, personal connections and the full range of human emotions doesn't exist. The urge to engage in the eating disorder symptoms and retreat from life dominates daily life. 

The thought process that keeps someone attached to this existence repeats the same messages over and over: relationships are not reliable; people always disappoint you; you have figured out how to stay skinny and that's most important; nothing will ever work out for you; you're not worthwhile enough to anybody; no one really cares; I (the eating disorder) will protect you.

These thoughts feel absolutely true which makes the need to stay close to the eating disorder even more important. The way to challenge these lies is not to implore someone to eat. That only fuels the eating disorder further. An effective approach is to challenge the lies again and again, to point out that the lies themselves keep someone so sick. 

The next post will explain how someone escapes the ego syntonic experience of an eating disorder in recovery and how family and friends can support the process.

Ways to Counter the Eating Disorder Thoughts

The last post explored the power of eating disordered thoughts and why they exert a strong grip on people trying to recover. It's difficult for people without these illnesses to comprehend how thoughts about not eating can dominate one's mind. The combination of a seemingly inescapable thought process and the inexplicable nature of the mental illness leads to extreme isolation and despair. 

I realize that presenting the last post without some guidelines to face the thoughts can appear to be fairly demoralizing. 

There are three main ways to manage these thoughts through recovery: personal relationships, honesty and replacement thoughts. Although the concepts are relatively simple, putting them in place daily against automatic thoughts of the eating disorder presents one of the major challenges of recovery. 

A person fully engaged in the eating disorder with no intent of recovery finds the eating disorder thoughts largely comforting. The thoughts themselves may be harsh and critical, or even nonsensical, but they present an easy roadmap to follow for a predictable daily life. As long as the thoughts go unchallenged, the person experiences an enormous amount of comfort, often described by many as a best friend or partner. 

The existence of a risk-free relationship to an internal set of rules tends to obviate the need for any true relationships. The relationship with a thought process feels very real and predictable while real relationships are unpredictable and scary simply because they involve another person with their own thoughts, feelings and needs. 

There are obvious needs an eating disorder cannot fulfill, and even a small step into recovery exposes the incredible loneliness right below the surface of the illness. Opening one's mind to wellness involves re-engaging in relationships. The process of establishing and deepening those connections weakens the eating disorder thoughts each day. One step in facing the thoughts is consciously making the effort to create true connections in the world which highlight the emptiness of the illness. 

The thoughts thrive on secrecy and lies both to people in the world but especially to oneself. The fundamental messages of an eating disorder are similar for almost everyone: you don't really need to eat; you have found the comfort you need so who needs other people; people always let you down; the eating disorder is the best thing you'll ever have. These internal thoughts become one's reality. The sense that these messages are lies no longer rings true.

Either talking to other people or in relation to oneself, these lies are the basic philosophy of life. They become the bedrock of how to function day to day and lead to a life full of the illness but little else. Constantly working to question these lies and instead start to believe the reality of the eating disorder as an illness critically weaken the thoughts over time. 

By creating parts of one's life separate from the eating disorder, the person in recovery can recognize and identify other daily events and thoughts that compete with the eating disorder thoughts.

The person in recovery starts to be able to identify eating disorder thoughts as part of the illness rather than automatic, true facts. In doing so, it becomes possible to replace the illness thoughts with other realistic thoughts about daily life. This will weaken the thoughts as well and render them much more powerless in time. 

There are many steps in recovery that allow a person to face the eating disorder thoughts and continue the road to wellness. It's crucial for family and friends to work hard to understand the power of the psychological part of these illnesses and acknowledge the challenge of getting well. As the person better understands the ways to counter the thoughts, it will be easier to communicate their struggles and need for support. The better one understands this component of recovery, the more hope one can have of getting well.