GAINING:
The Truth About Life
After Eating Disorders

The other day I was talking to a friend in Los Angeles, an Episcopalian priest who founded and runs a school and daycare center near Skid Row for the children of garment workers. Alice is one of the most inspiring, generous, and down-to-earth people I’ve ever met, and her ability to accept and embrace all people, from junkies to Hollywood celebrities, without judgment fills me with admiration. By contrast, my conversations with Alice always make me painfully aware of my own judgmental nature – particularly with regard to myself. If I were a truly good person, I think, I’d be devoting my life to working with the poor and downtrodden, like Alice. Hers is seriously important work.

Over the decades I’ve known her I’ve arranged for many students to spend summers doing community service at Alice’s center, but I haven’t volunteered myself. My work is writing and teaching, and Alice never fails to ask what I’m working on. She welcomes volunteers but recognizes that not everyone is equipped to deal with a crowd of rambunctious mostly Spanish-speaking children. The demands of these children are so constant that it’s difficult even to have an uninterrupted phone conversation at the center, so Alice had trouble hearing my response to her question about my current project, the benefit book I’m editing about recovery from eating disorders – due out next year.

“What’s the cause again?” she asked.

And I instantly went into apology mode, feeling the need to justify eating disorders as a problem worthy of activism because of the lives it claims, the waste of human potential, the misunderstanding that surrounds these mental illnesses, and the need to call the beauty, fashion, and food industries to task for their role in perpetuating these disorders. I gave Alice an earful that she could barely hear for the tug of small hands on her skirts and the request of a homeless man to use the telephone when she was done.

“That’s great,” she said. Knowing Alice, I’m certain she meant it. What my mind heard, however, was that eating disorders were so far off her radar, she had no idea what I was talking about. What I felt was the weight of stigma that surrounds this issue, pigeonholing it as a problem limited to rich white girls and women who supposedly have the luxury of “choosing” whether to eat too much or too little, or to waste great volumes of food by purging.

We concluded our conversation about my college-age son’s interest in volunteering at the center (he, with the infinite patience and flexibility that I lack, adores working with large groups of little kids), and I hung up feeling the familiar tug of self-judgment and shame.

I know the truth about eating disorders. I know they’re pervasive in every community, among men as well as women, Hispanics and African-Americans as well as white, lower income as well as upper income families, and throughout the world. I know that they exist universally because of the primal nature of eating, so close to the existential essence of being. To eat is to live, and to deny, distort, or destroy the practice of eating is to signal pain so deep that it threatens survival. There’s nothing voluntary or “chosen” about this pain, much less the desperate need to express it. The trivialization of eating disorders is tantamount to trivializing suicide. The lives that can be saved from these illnesses belong to people who are every bit as worthy and valuable as the children blossoming under Alice’s care. I know all this better than most, yet stigma makes it so very difficult to get that message out.

I fight this stigma within myself. My recovery from an eating disorder did not erase my judgmental nature, much less the judgment of society. And stigma is a creature of judgment just as eating disorders are. You can easily recover, only to aid and abet ED by belittling the relative importance of these illnesses, given the larger, graver, “more important” problems in the world. I mean, why would anyone waste energy fighting eating disorders when there are so many wars, polluted oceans, starving children, prisoners of conscience, brutal murders, pedophiles, hunted whales, endangered tribes, and on and on and on.

I try to be mindful of the damage such judgment can do. After all, it was precisely this kind of thinking that ushered me into anorexia as a teenager in the 1960s. The scope of problems that overwhelmed us in those days included Vietnam, three American assassinations, and the uncivil war in the South over civil rights. The enormity of chaos paralyzed me, and my inability to solve these problems was one reason I told myself I didn’t deserve to eat. I stigmatized myself.

Now, even though my eating disorder is long gone, that impulse to demean myself – and all that I do -- remains. The shadow of judgment, if not confronted, will darken my writing, my teaching, my cooking, my gardening, my relationships, and my causes. I try to remain mindful and simply watch the shadow until it passes, but as I do so I notice that the judgment isn’t entirely internal. It’s difficult to make a move in our culture without some external voice or image reminding us that there’s a “better” way. And whether through doctors who belittle the problem of binge eating; designers who deny that their fashions promote anorexia; philanthropists who consider eating disorders unworthy of research funding; or insurance carriers who decline to cover adequate treatment for these illnesses, our society consistently stigmatizes not only eating disorders but the fight against them. There are so many “better” causes.

I’m guessing I’m not alone in internalizing this message. One of the benefits of recovery is that it frees us to pursue genuinely rewarding interests, to explore and address a broad range of challenges, and the last thing many veterans of eating disorders want is to stay tethered to their past nightmare as activists. But there’s a big difference between plunging into other passions and missions, and treating the fight against eating disorders as an insignificant or minor cause. If we have the opportunity to help one person, save one life, or open one mind to the truth against these illnesses, there’s no reason to apologize for seizing that opportunity and making a difference. As my friend Alice always tells me, no one of us has the power to solve all the world’s problems, but each of us has the power to change the world one person at a time, even if the only person we succeed in changing is our self. It’s all “important” work.

Dear Friends,
The crisis in insurance coverage for eating disorders has been escalating for years. The good news is that most recent lawsuits have been decided in favor of patients, forcing insurers to pay for treatment. The bad news is that, too often, the lawsuits are decided too late to save those patients.

Whatever our own stage of recovery, we should all beaware of this issue. Here is an excellent op-ed from today's Los Angeles Times. One of the authors is Dr. David Herzog, whom some of you may remember from my book. He treated Caroline Knapp.

Be well and fight on,
Aimee

Starved for adequate care
http:/​/​www.latimes.com/​news/​opinion/​la-oe-herzog28-2008jun28,0,678390.story


Insurance companies too often deny needed treatment to eating-disorder patients -- sometimes with tragic consequences.

By David Herzog, Nancy Matsumoto and Marcia Herrin
June 28, 2008

Anorexia nervosa struck Janell Smith, a teacher's assistant, when she was 23. The active young woman loved by her family and friends began to disappear, overtaken by a tyrannical inner voice that told her she was too fat to deserve to eat. Swallowing even one spoonful of food became a monumental act of will; just seeing calorie-rich mayonnaise on a sandwich was enough to send her into a panic. For three years, the disease assaulted her body, mind and spirit, shrinking her to a low of 63 pounds on a 5-foot-3 frame, while the effects of extreme starvation on Smith's brain made her incapable of thinking rationally.

In January 2003, she was hospitalized at Laguna Beach's South Coast Medical Center, at first in the psychiatric ward. But Smith's plummeting weight landed her for a time in the medical unit of the hospital to be tube fed. Then, in early March, Smith's parents, Mary and Brian Smith, were informed by her insurance company, Magellan Health Services, that she would be discharged in three days, despite the dissenting view of her caregivers. The company was cutting off coverage for her hospitalization.

Janell Smith was still far too sick to be admitted to any outpatient treatment program, and her mental condition was known to be fragile. Still, she was forced to return to her condo in San Diego, where, a week later, she committed suicide by overdosing on a mix of alcohol and pills. She died on March 12, 2003, 26 years old, another casualty of a disease that has the highest successful suicide rate of any mental illness.

After their daughter's death, Mary and Brian Smith sued Magellan and its subsidiaries for wrongful death and acting in bad faith. Facets of the suit have wended their way through the state court system up to the California Supreme Court, but the case will finally be heard before a jury in Los Angeles starting Monday.

The case highlights the issue of "medical necessity" that lies at the core of so many eating disorder-related health insurance battles, and that will be central to any health insurance reform. How does an insurance company decide who is sick enough to warrant treatment or hospitalization? Whom do
we hold accountable for decisions about which treatments are "medically necessary" and which aren't?

Answers are hard to come by because insurers deny or severely limit coverage for an eating disorder -- as with all mental illnesses -- based on a medical
assessment process that is neither uniform throughout the industry nor transparent.

So far, attempts to change this system have been successful only in a piecemeal fashion. The suicide of Anna Westin, 21, in 2000 after her insurer denied coverage for her anorexia led to a lawsuit against Blue Cross and Blue Shield of Minnesota. The suit, which was settled out of court, resulted in the company's redesign of its medical assessment procedure and, in turn, expanded access to care for members with eating disorders and other mental diseases. Earlier this month, Aetna settled a class-action suit over
coverage for eating disorders, agreeing to pay $250,000 in reimbursements to as many as 100 New Jersey policyholders whose claims were denied.
The American Psychiatric Assn. has issued clear guidelines for the care of patients with eating disorders (including when to hospitalize and discharge
them). Insurance companies, however, are not compelled to follow these guidelines and seldom do. Nor are they required to heed -- or even listen to -- a patient's own doctor. Instead, they use the catchall term "medical necessity" to differentiate those who merit coverage from those who don't, without defining the term.

With insurers ducking behind this meaningless lingo, patients and their exhausted families can only mount appeals, face mediation or sue. But corporate stonewalling, quibbling over claim-filing technicalities and other bureaucratic minutiae often simply wear them down.

Smith's parents lost their daughter to an insidious disease that is much better understood than it once was. But the gap between what doctors and
researchers now know about anorexia's deadly risks and how it gets treated in the real world of the health insurance system was, in Smith's case, too
wide. Narrowing that gap will require bringing healthcare professionals, insurers, lawmakers and consumers together to hash out medically safe and ethical guidelines for the care of the mentally ill, as well as a system to keep abreast of research. Unless that happens, those who can pay for treatment out of their own pockets after their insurance company cuts them off will get the care they need, although it may bankrupt them. Those who can't afford such treatment, such as the Smiths, will be out of luck.

David Herzog is a professor of psychiatry at Harvard Medical School and directs the Harris Center for Advocacy in Eating Disorders at Massachusetts
General Hospital. Nancy Matsumoto and Marcia Herrin are the coauthors of "The Parent's Guide to Eating Disorders."

BETWEEN WORDS

Some of us struggle with gaps. Memory gaps, energy gaps, gaps between lovers, jobs, marriages, or friends. Some of us fall into the gaps and land in deep depressions, accompanied by whatever symptoms of self-abuse, starvation, alcohol, or bulimia come most naturally. Others reach out so fiercely for help that we pull others with us into the gap. And a few learn to breathe softly and float for dear life.

I seem to be forever trying to mind the gap. I’m a middle-aged woman, an empty nest mother, an unemployed wife and writer currently “between books.” Most of my days seem comprised of gaps, and filling them is not always an option. As anyone my age knows, when the mind springs a gap – also charitably called a “senior moment,” the least effective response may be a rush to fill it with words. That effort to find the misplaced word can be contagious, even entertaining, turning – in my family -- into a sort of verbal charades. But the exertion of willpower over memory can also freeze circuits with frustration and rage against the aging machine. Only later, during the float of slumber or a warm shower, will the missing word snap to attention, gleaming and naughty like new!

Sometimes the most effective way to mind the gap is to relax and trust in oneself even when the evidence is not encouraging. This is a lesson, I’ve found, that applies to so much more than faltering memory. It applies to failure of just about any kind. I try to train myself on the small gaps so I will remember the lesson when I’m faced with the truly overwhelming losses that almost all of us are bound to face sooner or later in our lives.

This is not an easy lesson for people accustomed to ordering their lives, striving to perform at the top of their game, measuring and weighing their accomplishments so that there is no doubt about their discipline and drive. It’s not an easy lesson for me, as I realize all too often when I sit down to write and my voice fails me. The words don’t come. The ideas don’t flow. I must be a total failure. Sound familiar?

We all want desperately to be seen accurately and heard clearly. When we’re not, some of us do terrible things to our bodies and minds. But in order to be seen and heard we have to get comfortable in our own skin and calm down enough to hear our own voices. Panic, anger, frustration, hurry, blame, and shame make it impossible to feel comfortable or talk clearly. These negative emotions turn our words into sharp pointy objects that we turn against ourselves. When this happens, the refuge we most need may lie between the words -- in that very gap that our words are railing against.

Sometimes we can hear ourselves most clearly in silence. Learning to sit with that silence, without struggling to fill it, is one critical key to minding the gaps in our lives without falling into them.