The Dos and Don'ts of Parenting a Child in an Eating Disordered World--Part II

In an increasingly homogeneous and anonymous world, we all seem to be interchangeable pieces on a chess board, shifting back and forth according to abstruse rules, awaiting the inevitable endgame. In the end, a rook is just a rook, a bishop just a bishop. The qualities that might have made someone unique years ago in a small village are a dime a dozen in the wide, interconnected world. The hope of being special or extraordinary--the unspoken dream if not expectation of modern-day parents--is just a mirage, completely out of reach. Reasonable goals of comfort, companionship and even personal satisfaction are too humdrum to mention. They are the bare minimum, what's to be expected.

The building urgency to be special and recognized above all else has taken over a large swath of childhood. One stark result has been to complicate relationships, for parents and children alike, from the barest acquaintance to the most dear family member. Cooperation and even altruism have been critical to the evolutionary success of humans. The growth and complexity of our social system along with the sophistication of our minds distinguished us from all other species and led to the astounding development of civilization, a continuing process we witness every day. Within this framework, the value of the individual needed to be acknowledged to provide incentive to work for the greater good. Only in recent generations has the scale of the world become so large to essentially eliminate any sense of the individual and leave a growing set of driven, albeit privileged, people competing in a race to nowhere. Yet the larger changes in human society cannot extinguish the personal desire for purpose, identity and recognition. With no outlet for these basic urges, the frustration, especially among the young, has acceded to a blunt disregard for others' well-being. Taking responsibility for one's actions seems to be a thing of the past. Intention is now the bellwether for responsibility: if you didn't mean to do it, then it doesn't really matter. The experience of being an indistinguishable player on a chess board has relegated cooperation a thing of the past.

Nowhere is this change more clear than in families, especially those of privilege. With unrelenting pressure on children to accomplish, excel and succeed, competition is drilled into a child's development almost instantly. The societal pressure to expose infants to stimulating classical music videos, track early educational milestones like a stock trader glued to the latest market report and craft extracurricular activities to ensure a child is gifted in something valuable drowns out the freedom and creativity that embodies this stage of life. As panicked parents watch the acceptance rates at elite universities gradually diminish, effectively approaching zero for all intents and purposes, the mantra goes that a child has to achieve something valuable, something extraordinary, something miraculous in order to gain admission, and thus an entree into any semblance of success. And so the disappointed parent turns a child into the family pawn, the most mundane of all chess pieces, to achieve something noteworthy, redeem the family name and, of course, experience nothing but personal satisfaction. And the parent will be sure to make this happen with no regard for others along the way.

Looking back to the end of the last post, the question of how not to micromanage as a parent becomes absurd. How can a child come close to achieving these results unsupervised? Who will watch how this child works, plays, sleeps and eats? Each minute is precious to reach the family goals.

There are two points to take from the undoing of a child's freedom. Several times in the last few posts, I have referred to personal responsibility, namely that the personal drive for recognition and the family urgency to rectify past failures means that personal gain trumps all. As the privileged youth largely ignore the growing inequality of our society, unless volunteerism as a graduation requirement makes a difference, the group most likely to shed light on our failures instead slaves away at the mundane tasks that lead to personal success. A parent, aware of the luxury privilege brings, would do well to reflect on the responsibility that comes with such good fortune and realize that a child needs to be taught to look outward at the world around them. Inculcating civic duty, a deep sense of fairness and an ingrained sense of personal responsibility may not follow the current doctrine for parenting success but can shift the focus from the cult of family and recognition to the molding of a good person.

Second, there is hubris in believing that everything a child needs to learn and do can be mapped out by devoted parents. The freedom to be a child, to be allowed to think and create and grow and learn also has value in society. Undoubtedly, each generation adds a new perspective to the current state of society and helps us all see and understand things a little differently. The value of a new and agile mind piecing together the facts of the world opens up unseen paths and helps the world become a better place. The expectation that good parents will force children into a scripted world, with every moment and activity accounted for, devalues the voice and legitimacy of new ideas and thoughts. A parent would do well to squeeze freedom, exploration and creative thought into the daily lives of children and encourage them to develop and trust their budding point of view.

If the parents breeding children mired in disordered eating instead focused on raising responsible, thoughtful, reactive minds, would this really lower the in incidence of kids with eating disorders? Any answer to this question is likely a blind prediction and at best an educated guess. Nevertheless, the next few posts will explore the possible results of a shift in parenting in the context of another question: why is it so hard to give up an eating disorder?

The Dos and Don'ts of Parenting a Child in an Eating Disordered World

It is a telling sign of privilege when family life revolves around what's best for the children. In the stereotypical household, adults organize their time, night and day, around entertaining and enriching children's activities. The underlying sacrifice is unacknowledged, even expected, because who would dare not follow this parenting model. Brushing aside any remaining adult desires is a given, although the most pressing, if subconscious, ones become incorporated into the often unspoken family philosophy, thereby creating the myth of unity, as if the disparate personalities and needs of the family members can come together as one. Unity of purpose may have been an evolutionary benefit, but unity of mind--a cult of family--certainly was not. It is a dangerous precedent to equate psychological well-being with toeing the family line but that is exactly what the cult of family dictates. The ultimate conceit of the privileged family--the socioeconomic class most at risk for producing an eating disordered child--is not just the goal but the inalienable right to raise a happy and, using community-based measures, successful child. And that somehow, inexplicably, this must be what the child wants too.

Not particularly long ago, but long before the disordered eating epidemic, children were expected to fit into adult life. This was a time when there was living memory of a brood of children raised primarily to improve family survival. The pressure to make it far outweighed the luxury of nurturing a child's identity. Providing for children--maybe just surviving to adulthood--was enough; moderating feelings, massaging egos and micromanaging personal growth were not even on the table. They became who they were to become and, hopefully, followed the path laid out before them. Children were psychologically free since no one was terribly interested in what went on in their minds, unlike the current norm when nothing is private or sacred. These days children, burdened by the expectations meant to overcome their parents' personal disappointments, have their identity crafted like a shell made to order by their parents' exact specifications. Sadly, this happens long before developing any self-awareness, let alone a fledgling sense of identity, themselves.

This default view of involved parents has been seen as a sign of the evolution of the privileged family. No one questions the benefit of parent as de facto child psychologist, subtly questioning the kid like a little adult and unconsciously teasing the impressionable mind to tell the parent what he wants to hear. Parents used to know, instinctively, that kids simply played and learned for many years; the struggle for self-awareness, internal stability and personal direction, thankfully, came later. Now the false premise of making mini-adults co-opts the freedom of childhood for the personal satisfaction of needy parents. The inevitable pressure that builds between the desire to please with the innate drive for independence and identity has clear consequences, one of which is the temptation of food restriction and thinness.

It is humbling to see the well-intended parent guide children into the chaos of an eating disorder. It is daunting for the child not to see a way out. But the anti-tropes of the privileged family are never spoken: not every child is a prodigy; some kids get C's; different children have different strengths and weaknesses; achievement is not guaranteed from hard work; any difficulty in school is not by definition a learning disorder. Most importantly, a child's life is his to lead, not a second chance for parents to correct their mistakes or move past their regrets.

The path from prolonged, encouraged dependence on family to a focus on thinness and weight is a theme of this blog. The reward and praise for weight loss both satisfies proud parents and opens a new but false direction of independence and identity. The underlying message of a burgeoning eating disorder is clear to any adult who will listen: "No one can tell ME what to eat." This tidy package satisfies the cultural norm, especially during adolescence, while providing the simple solution any child craves. There is no gray area around disordered eating and weight, just a simple right and wrong. Encased in the pre-fab shell of identity and expectation, draped in the mantle of hope and unlimited potential, this child desperately seeks an escape. An eating disorder can be just that way out.

The attitude towards food and weight taught at home is a critical part of helping a child avoid the risk of an eating disorder, but the family message about identity and expectation is perhaps less obvious but equally important. The rise in the incidence of eating disorders has coincided with the transformation of family. Ironically, fostering the growth of a child's identity takes away from the freedom to explore and learn. The creation of the hovering, over-involved parent has stifled the experiences of childhood that lead to a sense of identity, with both accurate and flawed parts, that grows with time. But this ever changing sense of who we are is a freedom of being human, a right akin to the basic self-awareness and consciousness we take for granted every day. Recreating a world where we just pay a little less attention to the inner workings of a child's mind, where we grant kids a little privacy, may go a long way to stem the tide of eating disorders.

This post addresses the freedom for children to be allowed to become their own person. Part of the prescriptive approach to raising children stems from unhappy parents looking for salvation in future generations. That salvation is no longer something attainable, like the antiquated belief in the American dream. The family expectation is to become something great, something beyond one's imagination: the bar has been set much too high.  Under this pressure, the suggestion for a parent not to do something falls on deaf ears, especially in a culture which insists that something can always be done, someone can always be blamed--society, media, government, big business or parents. Then is it not just the moral but legal obligation of a parent to guide children through the maze of the modern world? The next post will address this vacuum: if a parent doesn't micromanage, then what should a parent do?

The Tangled Web of Identity and Eating Disorders

In a recent meeting, a colleague, speaking about her work with children over many decades, recounted the story of a patient she has treated for thirty years, starting at age six, for "the most profound anxiety disorder I have ever seen." Just the other day, the patient, deliriously happy but exhausted, called to recount the story of the birth of her first child. "Imagine me," she said, "dealing with needles and so many doctors examining me! But I just explained to them my longstanding anxiety and fear of doctors, then they helped me through it." My colleague paused for emphasis, clearly proud, and then presented the moral of her story: if you know yourself and are clear with others about your limitations, anything is possible.

As she went on to expand her thesis into play therapy for children and even parenting advice, I found myself thinking about identity. This patient's sense of accomplishment was momentous and her ability to recognize her achievement moving, but I felt something nagging at me nonetheless. Although self-acceptance is no doubt a critical part of maturity, an identity--the reflection we see both in the mirror and through our family and friends--cloaked in symptoms and limitation seems like a misguided message for kids. Isn't childhood a time for hope and promise? Won't the humbling lessons of adulthood only limit a child in need of perseverance and confidence? All of this left me stuck on the larger question: what are the implications of an identity based largely on the extent of our deficiencies?

The individual accomplishments of my colleague's patient were something to celebrate, of that I was clear. The intended message, though, explored one way of addressing kids' struggle to find identity in today's world: find oneself through difference or limitation and fashion a life from the options remaining. But the implicit advice was cautious if not undermining: avoid challenge and even confrontation to do what you're capable of. Satisfaction comes not from hard work but from the most manageable path in front of you. This reeked of a self-help approach to the world, or the opening salvo of a daytime talk show special, not a potential solution to helping kids build a sense of who they are and certainly not a philosophy of expectation or hope for change. But when the pursuit of happiness becomes the prevailing life philosophy--an unfortunate consequence of the banal advice-giving media spawned from its roots in psychotherapy--progress, hard work and challenge all seem to go by the wayside.

The infiltration of psychiatric symptoms and diagnoses into our self-image is a given in many pockets of society. It used to be that only medical students during their psychiatry rotation nervously thumbed through the latest DSM--the bible of psychiatric diagnoses--terrified to find their deepest secret staring back at them from the criteria of a mental disorder. Now, the DSM is widely available through a mere search of the web, and identifying with mental illness a rite of passage for adults and youth alike. The trying, social process of overcoming shameful secrets has been supplanted by the now commonplace but brazen announcement "That's just my OCD." Your own personal psychiatric symptom is almost a part of the social resume: hometown, religion, race, socioeconomic background ... current mental illness. Or perhaps it's a permanent crutch, a built-in limitation for what one can achieve.

Of all the psychiatric symptoms, manipulation of food and weight create purpose, attainable goals and success out of thin air while simultaneously obliging those looking for children to just be happy. In the cloud of psychiatric symptoms, weight loss and the subsequent positive attention--including the hushed whispers of "is she anorexic?"--is almost a badge of honor, not a crutch in the least. It feels like the sky is the limit as the pounds come off. The demoralizing expectations of a life hampered by a series of psychiatric symptoms evaporates. The world figuratively and literally feels a little bit lighter. The growing epidemic of disordered eating and pursuit of thinness is a simple solution for the directionless child compelled to find meaning in the world. At least for a little while.

Caught between the adolescent drive for purpose and the lure of losing weight, many girls find solace in identifying as eating disordered. The formative years from middle school through college, if nothing stops the onslaught of the disease, can leave one's identity intertwined with the disorder itself. A bright, quick mind, when consumed with the fear and intensity of an eating disorder, will create a vast and complex array of rules to follow in this hidden world. While being controlled by the details of calorie-counting, avoidance of terrifying foods or the search for culinary perfection, the consummation of identity and the disorder is complete. In the end, "you ARE anorexic" is the accepted statement, not "you have anorexia." The grammatical difference may be subtle, but the meaning is crystal clear. Treating an illness is one thing; treating an identity is another.

This post brings up as many questions as it does answers. How do adults help children form identity? What avenues for self-exploration and achievement don't exist for kids? Without other available options, weight loss and food manipulation are powerful tools easily at a child's disposal. Whose responsibility is it to open new doors so at least there is competition for a child's attention and drive? I'll start with these ideas in the next post.

A True Moment of Reflection

Looking in a mirror is a trivial moment in most people's day. Whether to survey an outfit, observe a blemish or simply take stock, few things are more routine. Yet this nonchalance is symbolic of a life blindly led. It is common to mistake emotionally-charged moments, such as languishing in disappointment and self-criticism or relishing successes, for moments of true introspection. Deeper reflection means not just living in the moment but looking at what we hide even from ourselves: jealousy, greed, explosive anger and shame but also the most vulnerable love, dependency and tenderness. A person living without reflection is still driven by these internal, emotional forces but acts as if reasoned decisions and illusory control pave the way.

In its entirety, the community of people with eating disorders share the burden of empathy, as I described in the last post, and the concomitant role of society's emotional mirror, a thankless role for a world unwilling to take a good look at itself. With a quick glance, perhaps for something as mundane as checking its hair, the larger community may acknowledge what's in the mirror but has no interest in true reflection. Just as a family can heap responsibility onto an empathic family member, society can choose to blame the faulty reflection.

Many of the truths, even those too obvious to ignore, can be readily explained away. Obesity and diabetes in children: lazy, uninformed, uncaring parents. Homogeneous, unhealthful fast food: uneducated poor food choices of the masses. Epidemic of disordered eating: children making immature decisions. Explosion of eating disorders: ah what these crazy women will do to look thin. And the quick fixes are like patching a roof about to collapse from a deluge: misleading nutritional information on food items, Bariatric surgery, spa retreats to cure eating disorders.

The facile mind can always find a new explanation for the unusual or even the absurd. History is rife with tales of societies caught up in sheer folly on the way to destruction and chaos. The path lined solely with reason lands, sooner or later, in the muck. After crawling out of that mess, finally, one will have to really look in the mirror to see what happened. In that moment, the empathic women, silenced by eating disorders and filled with a different understanding of the manipulation and degradation of food and weight, might have their moment.

If empathy is the glue that binds humans into a complex, interdependent and ultimately fair society, then is a world without empathy worth living in? Modern living is about shared experience lived in isolation. We all live in our little bubbles, know a smattering of like-minded people and misuse our unfulfilled desire for connectedness to obsess about our own daily minutiae. The care and concern for others is routinely quashed: war looks suspiciously like the latest video game; natural disaster like the most recent apocalyptic movie. And if the empathizers, lost and ignored, have been wooed by calorie counting and the number on the scale, who cares about what's happening to people in need? Where is the mirror to steer us back to our collective responsibility to care for each other?

The most curious and disturbing aspect of our current food culture is that the well-off now starve while the poor are fattened up on food akin to garbage. This discrepancy is most notable in children. It's the right of passage for a suburban girl to start her first diet while the inner city kid only finds McDonald's in the neighborhood. The implicit government support--through lax regulation of the food industry--of this travesty and the blatantly unethical corporations which capitalize on the social forces (both the weight loss and various food industries) work hard to silence the reflection of empathy. Nothing can tamper with the bottom line. Instead, we all just continue to blame the reflection.

I fear that the silenced voice of empathy hides the ugly underbelly of our isolated world. The shameless celebration of the culture of plenty obscures the inequality, need and pain all around us. Surrounded by such abundance, the acceptance both of starvation and obesity-related illness--paradoxically in the well-off and poor, respectively--is unconscionable yet sadly has become routine. Meanwhile, the group of people most aware of the absence of social justice and most able to spearhead a revolution--an apt analogy during this time of upheaval in the world--suffer needlessly at home alone except for their food and scale.

The next series of posts will shift to food, children and identity. I will start by discussing how our relationship to food helps create identity in children and is closely intertwined with the development of an eating disorder.

Empathy: From the Individual to Society

During the transition from the psychoanalytic to self-help era, empathy is one of those words that has seeped into the general lexicon. For many, empathy and sympathy are false synonyms with the new vocabulary word intended to impress others rather than convey new information. In other circles, using the word, still not necessarily correctly, in casual conversation serves as a hidden signal to search out like-minded emotional souls. If received by one in the cohort, the missive opens the door to commiserate about the burden of carrying others' emotional pain--an unappreciated service to society. Otherwise, the message easily slips by those not afflicted.

In short, empathy means identifying with and feeling the pain of others. A complete lack of empathy, a rare and terrifying aberration in emotional development, is a crucial element to become a sociopath. People with a low empathy quotient tend to be self-absorbed and, although not particularly harmful to society, devastating to any intimates. In some ways, the single-mindedness of the self-involved can propel them to high achievement while limiting the ability for any close relationships. An overwhelming majority experience empathy for others in pain but can emotionally protect themselves from being overwhelmed by these feelings. Without this unique social construct, humans would not have developed the complex, social civilizations we have today.

For a few, empathy feels like a sixth sense, at times a gift and others a gaping wound. Feeling other people's pain is not a choice but a part of how one experiences the world. Deep personal connections, friends in need and even sad films or documentaries are all entrées into a powerful emotional abyss that allows for a vivid, invigorating world experience but, with no way to turn off the intensity, can at times turn into its own prison.

Many women with eating disorders have this level of empathy and describe the relentless feelings as unbearable. The illness numbs all emotion and pushes away any closeness in relationships, thereby significantly diminishing the intensity of any empathic response but simultaneously leaving innately interconnected women painfully alone. As a consequence, reconnecting emotions during recovery--a raw, exposing process--means not only re-engaging with the world but re-living empathy for others. This can leave people gasping for air at the overwhelming emotional intensity. Others' feelings come crashing down on them in a burst of psychological and emotional torment that can be hard for a person in recovery to identify, let alone tolerate.

The process of recovery can no more cure the hyper-empathic person than therapy changes one's personality. The goal is to learn to live with this ability and find a way to manage and cope with the vulnerability of daily life. What was a confusing and overwhelming realization as an adolescent can  in time become a facet of life as an adult. Our success and maturity depends as much on the ability to accept and hopefully harness our personality and interactive style as it does on the sheer luck of our life station. Empathic people can use their ability to identify and clearly express the collective emotions of those around us. But my optimism can hide the immediate reality in recovery. After a protracted illness, the road through treatment to acceptance is a long and arduous one.

Based on the last post, silencing people with eating disorders has significant meaning for our society. It's a short step to intuit the hidden meaning: people who harness their own empathy can be very powerful indeed. Individuals with a facile empathic response tend, on an individual basis, to harbor and reflect the emotions of those around them. For instance, in a relatively inexpressive family, the empathic member is usually seen as the "sensitive" one. On the surface, this moniker implies the person most emotionally connected but effectively means the ridiculed one attacked for not repressing her feelings sufficiently. Particularly unemotional families often accuse the empathic member of being fully responsible for everyone's feelings. When no one accepts their own emotions, it's convenient to blame the one incapable of repression for all of the emotions in the family. As absurd as this dynamic looks from the outside, scapegoating is an age-old method of maintaining stability in chaos.

However, by definition, the empathic family member actually reflects the emotions around her. She is a mirror for the family to see what's truly inside them. And if the reflection is too painful, why not blame the mirror itself. On a larger scale, a group of empathic people can reflect and even amplify the emotions of the society around them. Silencing those emotions dampens the impact of certain social forces. In a society ripe for change, the empathic set can galvanize a group to open new avenues for communal growth. The non-violence of the civil rights movement reflected the pain and patent prejudice to rally effective support and long-lasting effects.

What would the group of suppressed, empathic women--many trapped in the internal hell of eating disorders--reflect to society today? What social forces can be ignored by covering the mirrors around us? Injustice? Intolerance? Callousness? A stagnant, polarized world? I think the answers lie in what these silenced people might finally say when given the podium. Look out for the next post. 

The Meaning of Silence

The emergence of eating disorders as a new group of psychiatric illnesses in only a generation opens the door to a host of inquiries. The changes in food supply, the homogeneity of modern life and the cultural focus on weight and thinness are the explicit pressures encouraging disordered eating and, for those susceptible, eating disorders. But the more profound questions remain unanswered as to why the public remains so uneducated about eating disorders and why those afflicted are never heard.

From a sociological perspective, the increased incidence of eating disorders coincided with the impact of the feminist movement. Protesting the oppression and limits of women's lives brought about substantive change and opportunity. Today's girls feel confident that their goals and dreams need not be different from the boys. Simultaneously, the pressure to look thin, to harshly critique their bodies and to become a sexual object encroach on younger and younger girls. Disturbingly, the current ideal woman's body is that of a fifteen year old, not a grown woman. The academic, intellectual and professional achievements possible because of Betty Friedan and many others seem to have come at a steep cost. Why has this external equality among the sexes forced women and girls collectively to feel enslaved to an internal source of inequality?

Much of what I have written explores the hidden side of these diseases as opposed to the DSM-IV-TR--the psychiatric Bible--which lists a series of relatively concrete symptoms that comprise an eating disorder. Although an accepted diagnosis is necessary to create consensus among clinicians, the absence of an emotional and psychological guideline only propagates the deeply rooted misunderstanding. It is too easy for the public to equate Anorexia Nervosa solely with starvation, for example, without any awareness of the psychological torment at the root of the illness.

Perhaps the most suffering is caused by the feeling that someone is at fault for their entire illness, that they are solely to blame. One goal of therapy is to see the self-blame as part of the illness--how can you blame yourself for something you never could control? Relinquishing the personal responsibility makes room for healing and subsequently the painful, personal growth necessary for recovery. However, misunderstood by family, the media and even ignorant clinicians, patients remain alone and often spend years sure that blaming themselves is completely accurate. It is curious to me that the general public response to these horrific diseases is to corner the patient into feeling fully responsible. Why is the needed compassion replaced by ridicule or contempt? How did eating disorders turn into a media spectacle? It is hard not to interpret these circumstances as a covert societal force intended to silence this subset of women.

Interestingly, this is one similarity between eating disorders and disordered eating. The self-reproach of disordered eating can be a modified version of the self-blame of eating disorders. Both serve to tamp down any burgeoning confidence  fostered by the equality among the sexes today. Just as girls might be finding their rhythm in school, their attention shifts to body and self-image. Often, pressures to be attractive, including sexually appealing, entraps younger and younger girls. Considering the personality traits that increase the risk of eating disorders--motivation, perfectionism, drive and powerful empathy--it is hard not to connect the dots: many of the most successful girls are lost to the preoccupation with food and weight. The full implication of this statement is profound. Equality exists in this country no matter one's sex, but the covert societal forces now seem to generate enough internal turmoil in girls to severely limit their potential. By hiding the truth about eating disorders, society ignores and silences voices no one wants to hear. Now the inequality exists but can't be seen.

The next post will focus on the experience of empathy in people with eating disorders and the concomitant emotional pain of outpatient recovery, both on an individual basis and on the contribution to what remains concealed behind the public ignorance of eating disorders.

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.