A Public Education on Eating Disorders

It is one thing to consider the bias against people with eating disorders and the misunderstanding, judgment and fear driving the power of false beliefs. Standing up for the rights of the oppressed is a natural, if not always heeded, instinct. It is another thing entirely to imagine a world where the true suffering caused by eating disorders is widely understood and accepted.

However, the changes that occur in a generation can be astounding. There was no known diagnosis in the sixties and early seventies, limited treatment options a few decades later and a plethora of choices now. Children today are raised hyper-aware of eating disorders--diseases their parents at a minimum accept and their grandparents still question--and have usually been touched by their effects. Perhaps there is some hope on a communal level for greater understanding.
The obsessive desire to be thin--and all of the dieting and self-criticism that comes along with it--feels like a cultural fixture. Even though our passion for starvation has directly led to the increased incidence of eating disorders, the pressure to adhere to this norm is here to stay. And the seemingly natural extension that personally worrying about food and weight equates with a breadth of knowledge about eating disorders appears to have become the de facto logic of the uneducated masses. It is a short step to feeling entitled to express, with great certainty, completely false opinions. But without any public entity correcting the prejudice and revealing the reality of eating disorders, the cultural bias goes unchallenged. It is hard to change a belief without starting with education: a diet is not an illness. The first step is differentiating between disordered eating--the practically universal experience--and eating disorders.
Disordered eating is a choice to eat in order to lose weight instead of following the internal cues of hunger and fullness.  And the options, fully condoned by society, to eat this way are endless: diets, food restriction (low sugar, low carbs, low protein, no refined foods, etc.), skipping meals and the list goes on. The underlying belief is that choosing what and how much to eat is always within our control. Because this premise is so deeply untrue, the result of disordered eating is chronic dissatisfaction with one's body, disgust with one's inability to manage such a "simple" task and a series of futile attempts to find a satisfactory result. Even if someone lands at an acceptable weight, there is no end to the disordered eating because of the fear that any lapse will mean immediate failure. This is a state of mind as much as a state of eating.
To an uneducated mind, some of these concerns may sound like an eating disorder, but the fundamental difference between the two lies in one word: choice. Disordered eating is a choice to manage dissatisfaction with oneself by manipulating food. An eating disorder is not a choice at all. It is an illness. The driving force behind an eating disorder is the psychological torment that compels someone to continue all of the symptoms. The person is powerless to stop the cycle and attempts to function within the very limited confines the disease allows.
People with eating disorders are silenced by their illness so no one who really understands is ever heard. The clinical treatises, scientific papers, self-help books, documentaries and exposés all promote awareness of these illnesses without changing the misunderstanding and prejudice. Amidst the recent P.R. hype for Portia de Rossi's memoir about eating disorder recovery, a patient pointed out something critical: people who have these diseases are only heard AFTER they have recovered. Per usual, the media blitz around her successful recovery papered over the behind-the-scenes ridicule. And the private flogging is led by those with eating disorders. It is too easy to see through an apparently vulnerable attempt to show others the road to recovery. Instead, she becomes a symbol: the poor, weak TV star who had to learn to eat all over again. Why doesn't she say what having an eating disorder is really like? Because, more to the point, no one really wants to hear about that.
There is one place you can really learn about having an eating disorder. Pro-Ana sites are a provocative way of exposing the truth behind anorexia. While people are horrified by the glorification of extremely emaciated women, there is no attempt to understand what these sites mean. The takeaway message for the uninformed is that this is a subversive way to spread destructive tips to get sicker. The truth is there are many, many ways for people to learn eating disorder tricks. In fact, many patients say their first trip to an eating disorder hospital unit was really a crash course in how to really have an eating disorder.
The pro-Ana sites are one of the few ways the sickest people can feel less alone. The photos of emaciated women are meant to express how painful an eating disorder can be, how distorted and destructive the thoughts are. How can one's life goal turn into getting terribly sick and underweight? Yet it is telling that this one forum of honesty has been summarily banned.  Something is clearly askew when the places of healing can be as counterproductive as a website created to propagate the illness. But in one instance the sick are locked away, and in the other they are out in public. The completely illusory danger of these sites is the fear that eating disorders are contagious. Disordered eating is most certainly spread through the masses, but eating disorders are not like the flu. Based on fear and misinformation, the message is clear that eating disorders are a menace better seen than heard.
In wondering how to spread real knowledge about eating disorders, I come back to the continuous stream of emails and calls I receive from those who find me online. The questions revolve around seeking hope and finding someone who truly understands. From the patient sick of years of inadequate treatment to scared parents of a young child, they are all shocked when the truisms of disordered eating don't compare with the reality of an eating disorder. To find someone who understands the difference and is willing to acknowledge how much pain an eating disorder causes is half the battle. Without being presumptuous, I hope this blog contributes a little to spread the word. But nothing will change until the people who are sick are finally heard.
The next post will posit some thoughts as to why the community at large wants to keep the real, painful experience of having an eating disorder silenced.


The Prejudice Against Eating Disorders

The bias against mental illness has eroded over the past generation. There are still plenty of people who view depression as a lack of will power, psychiatric medication as a sign of weakness or psychotherapy as a salve for people who have no friends, but several changes in our society and the field of psychiatry have eliminated much of this prejudice. The advent of a diagnostic classification system for mental illness gave people a clear, accessible resource to understand the meaning of different diagnoses. The representation of mental illness in the media has exposed the public to the suffering of and healing process from diseases such as depression and schizophrenia. The explosion in direct-to consumer medication advertising--despite all of the deleterious effects I have described in several posts--has improved the public perception of psychotropic drugs. Finally, the recently enacted federal law mandating parity in insurance coverage for "biologically-based" psychiatric diagnoses with medical illness only reinforces our society's gradual acceptance that these are real diseases.

But where do eating disorders fit into the changes in attitude toward the mentally ill? Anorexia and Bulimia are two of the psychiatric diagnoses covered under the parity law. There are no medications advertised to treat eating disorders. And, as I wrote about in the series of posts on the media, eating disorders are everywhere in our national mind. On the surface, it seems like the pervasive view of eating disorders should be changing like it is for other mental illnesses. But, unlike other psychiatric problems, it is a fine line to the community at large between disordered eating--practically an accepted norm about food--and a full-fledged eating disorder. Not everyone has a theory about the cause of Bipolar Disorder or Schizophrenia, but who doesn't feel like they have a right to express their opinion about eating disorders? Even conscientious doctors often believe it is ok to discuss nutrition advice or personal opinions about thinness to patients known to have an eating disorder! The prejudice remains hidden behind a screen of seeming good intentions and judgment laced with complete ignorance of the reality of these illnesses.
The rationale of our preoccupation with food and weight--from any weight loss scheme to daily meal choices--is that we are in control of our destiny. Calories in equals calories out, right? Aren't we all little machines? These tropes drive the multi-billion dollar diet industry but vastly oversimplify the balance of diet and weight. Nevertheless, it is a small step in logic for most people to erroneously apply this line of reasoning to an eating disorder: staying sick is merely a lack of will power.  One fundamental message of this blog is to dispel this myth.
Eating, even for those who struggle with it, is an automatic, natural process. It is impossible to understand, let alone imagine how powerless someone with an eating disorder is when confronted with food. Will power has nothing to do with it. But the endless discussion about food in our culture mistakenly gives the impression that there is little difference between worrying about weight and a mental illness. In this mindset, calling someone anorexic--a label of severe mental illness--can morph into an envious taunt. And nothing more clearly shows the extent of our communal bias.
I have written before how our society essentially exposes all adolescents to the risk factors of developing an eating disorder. The idealization of being thin, the rite of passage of dieting and the acceptability of weight loss and food restriction pressure almost all teenagers to expose themselves to a prolonged semi-starvation state. At that point, other factors including biological predisposition and family and social dynamics--which are clearly out of the child's control--determine the final outcome.
Just as an adolescent girl may be praised for losing weight, despite the inherent risk of getting sick, her inability to recover will be seen as a sign of weakness. In fact, families and friends, after extended periods of support, sadly express their frustration by writing the person off. That doesn't mean eliminating the person from their lives but a more subtle expression of bias. If developing an eating disorder is a sign of weakness, then remaining sick well into adulthood is not an intractable illness but a permanent character flaw. The person with a chronic eating disorder becomes almost less than a person: she no longer deserves to be seen or heard.
The results of this prejudice are subtle. Often the person has a job, friends and even a relationship. But those closest to her dismiss her thoughts or feelings. No one really is around to listen anymore. Under these circumstances, someone with an eating disorder has no one to turn to but the eating disorder itself. The prejudice serves to isolate those suffering even more.
The public message--from industry to the media to government--promoting the understanding of mental illness needs to expand into eating disorders as well. Instead, society continues to reinforce the prejudice. One recent example is the reality television craze depicting severe weight loss in the morbidly obese. This is a symbol of the bias that eating disorders aren't really mental illnesses but instead constitute an evening's entertainment. With the current knowledge in the diagnosis and treatment of eating disorders, what can be done? How can knowledge about the real suffering caused by eating disorders replace the public notion of weak, unmotivated women? I'll talk more about this in the next post.


Can Families Heal from an Eating Disorder?

There is a long history of blaming psychiatric illness on dysfunctional families. The most storied example is the "schizophrenogenic" mother. Schizophrenia, a disease classified largely by psychosis or the misperception of things that do not exist, has since been shown to be caused primarily by inheritable, genetic traits in association with developmental brain abnormalities. During the period when psychiatry was grounded in psychoanalysis, the schizophrenogenic mother theory was based on the only means of psychiatric healing at the time. In a field with only psychotherapy at its disposal, putting the blame on an overbearing, emotionally overwrought mother for a primarily biological illness seemed only logical.

Since eating disorder research is still in its nascent period, the temptation to rely on family dynamics--in this case "enmeshed" mothers and daughters--as the primary cause of eating disorders is extremely strong. The extent that biological, hereditary and social factors play a role in the sharp rise in the incidence of eating disorders is unclear, but no one doubts the complexity of these illnesses. Although family dynamics surely play a role for many, the overarching mother-driven theory feels like a frustrated group of clinicians grasping at straws. But that is not meant to dismiss the role of family dynamics either. The effectiveness of the Maudsley treatment, as discussed in the last post, makes it hard to ignore the family as a powerful force that shapes the course of an eating disorder. Acknowledging the toll an eating disorder takes on families--and attempting to help the family heal--is an often neglected part of recovery. 
For many patients, the guilt of putting their families through the trials of eating disorder treatment--financially, emotionally and psychologically--for the second, third (or umpteenth) time serves as a huge barrier to progress. For people consumed with caring for others, the realization that getting better causes their family to suffer can be enough for a patient to forgo treatment altogether. It seems easier to function as best as possible and hide the disorder by pretending to be well. The internal suffering feels more bearable than the overwhelming guilt of revealing her persistent, shameful inability to recover.
This pattern usually occurs after someone has been sick for some years and been living independently. The missing piece in this obstacle to recovery is working on healing the long-term effect of an eating disorder on families. There is a wide range of responses from families early in the course of treatment. For some, an eating disorder is a willful act of disobedience from the beginning. A patient in this family often feels as if she caused the eating disorder and in some ways deserves her fate. But other families spend years researching the disease, seeking the best help and participating in the treatment process. After a time with limited improvement, even the most supportive family gets frustrated and eventually can't help but voice their feelings to the patient. It is exceedingly rare to find a family that, in one way or another, doesn't blame the child for her illness after a certain number of years. The simmering, silent anger and sense of loss can cause a seemingly unfixable rift between the patient and her family.
A necessary part of regaining both hope for recovery and healing in the family is to enable someone with an eating disorder to re-engage with her family. As an adult, the patient doesn't need her family to guide treatment anymore. Conveying a sense of purpose and progress can be enough to include families in the process while opening the door for new lines of communication. The entire family almost always remains aware that the eating disorder still dominates the patient's life but is bound to a false secrecy. The burden of maintaining this secret grows into a mountain of frustration and misunderstanding. When a family learns the patient is working hard in treatment on her own, those families which were initially supportive can often address longstanding grievances and try to establish a new joint effort of love and support. The relief of not having to be the driving force behind treatment also allows families to reconnect without the pressure of having to find an immediate cure. In families which blamed the child at the outset, the treatment needs to persevere alone, very separate from the family's influence, and the sense of loss that follows is a key element of recovery.
A patient's rightful place in her family, even after recovering from a protracted illness, is precarious. Families often act like the child with an eating disorder abdicates her ability to be a full member. She can be treated as fragile, irresponsible or even incompetent. On a general level, it is commonplace to view people with eating disorders as incapable in all facets of life. How can someone who can't feed herself be able to function in the world at all? This naive, prejudiced question exposes the fear and complete lack of comprehension of eating disorders in our society today. This will be the topic of the next post.