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.