GAINING:
The Truth About Life
After Eating Disorders

Essays, Articles, & Nonfiction Works
by Aimee Liu

RESOURCES
These treatment facilities offer specialized programs for eating disorders, including men and women over age 21.
Discover the many ways others are using their voices, talents, and passions to turn suffering into creativity and hope.
Links to websites and organizations that provide information and referrals.
References cited in GAINING
Books
How do anorexia and bulimia impact life AFTER recovery? GAINING is one of the first books about eating disorders to connect the latest scientific insights to the personal truth of life before, during, and especially after anorexia and bulimia.
"I've read countless books about eating disorders, but I've never seen one like this. Combining the professional wisdom of leading experts with personal experiences from women and men all over the globe, this book fills a gap on the recovery bookshelf. Anyone who has been touched by an eating disorder needs to read this."—Jenni Schaefer, author of Life without Ed
America's first memoir of anorexia, and one of the earliest books about eating disorders, originally published in 1979

Newsletter

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"Scientific Newsletter" Aimee Liu, 2005

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Dare to make a compassionate difference


Three years after GAINING was published, I'm still so touched by the letters I receive. I'm also honored to have established some fabulous friendships and correspondences with readers who have recovered since reading my book. Some of these individuals have gone on to be powerful forces for the recovery of others. They pay their health forward every day.
One such friend is Donna, who battled anorexia for decades and just sent me the heartfelt letter below. I am so proud of her, and so hopeful for the other woman whose life Donna found the courage to touch yesterday. In sharing this story with you, I hope that we all can marshal similar courage to reach out, show each other true compassion, and dare to make a positive difference in each other's lives.

From Donna:

i am writing because i know the value of sharing discoveries.
my street is not a busy street. it is beautifully tucked next to south carolina's version of forest gump...at least 4 magnificent, authentic shrimp boats call this road home. There are many shrimpers and locals that come to buy today's catch, but seldom a runner, unless it is me running home. today, however there was a woman, a severely anorexic woman, middle aged, hard to tell exact age due to the toll of the disease on her existence. she limped along, obviously some injury plagued her...she was gaunt...i pulled into my driveway, got out of my car and asked if i could talk to her...with a blank stare she said yes...
i said, i know the pain you are in, i know the jail you call home, you do not have to beat yourself and your body to a pulp. she responded, i am fine, i eat all of the time, i just love to run. i said i do too and i used to do what you do....run and run and run...
she replied, her friends are worried she is too skinny,i said you are....
i told her that i used to run multiple hours a day...her competitive response was, wow, i do not do that.
i said, you can get help, i am here for you, you can come anytime.
she looked at me and said i need to get going on my run, i said i understand....
she then asked if i had just moved here and talked about how special this spot was. as she began to run away, she asked my name and gave me hers.
i told her with tears in my eyes, that my thoughts came from the the heart, i too had experienced the hurt and the hell of this illness...i said she could get help, she could get out of jail...she was welcome to come to my house, i would listen, understand...
it took guts and courage to stop. i was taking a huge risk, but i did stop, and whether she "heard" me or not, at least she knows there is one person who knows what her life is like. maybe she will continue, but maybe not.

it was also a sure sign of my health and well being....as i no longer wanted to look like her and i felt extreme sadness for her.


Bravo, Donna! I am in awe of you.

THE FIGHT FOR INSURANCE COVERAGE FOR EDs


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.
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Anorexia's Red Herring

Too-skinny models may be a factor in spawning eating disorders, but they're just one of many.
By Aimee Liu

Published in the Los
Angeles Times,
September 22, 2006

THIS WEEK in Madrid, heroin chic was prohibited. For the first time, the organizers of a major international fashion show recognized that by showcasing emaciated models, the fashion industry promotes eating disorders. Under pressure from the Madrid government, medical associations and women's advocacy groups, the Assn. of Fashion Designers of Spain finally rejected morbidly thin models.

When selecting models for this year's Madrid fashion week, which ends today, the designers set a minimum body mass ratio (calculated on the basis of height and weight). Their required ratio was 18 — meaning a minimum of 119 pounds for a 5-foot, 8-inch woman. The bar was by no means high. For ordinary mortals, a ratio of 18.5 qualifies as underweight. Even so, five of the 68 auditioning models flunked.

To understand why they flunked, we need to look beyond the fashion industry to the true causes of eating disorders. These include genetic predisposition, temperament, family dynamics and personal trauma. I know; modeling fueled but did not cause my own adolescent eating disorder nearly 40 years ago.

Twiggy was my generation's Kate Moss. I fixated on her at age 13, and by the time I started modeling one year later, I'd dropped 30 pounds. Being skinny became my identity. At 5 feet, 7 inches, I didn't weigh more than 100 pounds again until I was 21.

My anorexia ultimately destroyed my career.

Models were — and still are — paid to make fashions look good, and that meant fitting sample wardrobes. Reigning teen cover girls Shelley Hack and Colleen Corby understood this. In dressing room lunches between shoots, I'd watch them wolf down tuna salad sandwiches while I pretended not to be hungry. They were lucky, I told myself, they could get away with eating. I began to lose jobs when I became so thin that stylists couldn't even pin dresses on me to look right. Still, I felt I couldn't eat.

Like many anorexic models, I was drawn to the fashion world because it reinforced my anorexia. I would be willing to bet that most, if not all, of the runway models disqualified in Madrid fit the same pattern — as do many emaciated gymnasts and ice skaters.

Three years ago, I began interviewing medical researchers as well as middle-age women and men with histories of anorexia and bulimia. I wanted to find out what we know now that we didn't know in the 1970s, when I quit my self-imposed hunger strike. I learned that researchers now are discovering genetic links between eating disorders, depression and obsessive-compulsive disorder. Genes also shape the temperaments of people who are prone to anorexia and bulimia, although the mechanisms for this are still poorly understood.

A landmark 2003 British study found that certain innate childhood traits, such as perfectionism, inflexibility and cautiousness, each increase an individual's risk for anorexia by a factor of seven. Someone like me, possessing all five traits measured in the study, is 35 times more likely to develop an eating disorder than a daredevil who happily wears mismatched socks.

Further, eating disorders are triggered not by pictures of Kate Moss but by sudden or cumulative experiences of intolerable emotion, such as shame or fear. Puberty unleashes a natural tidal wave of these emotions. Adolescence also happens to be the age when rates of sexual abuse soar, academic and social pressures intensify and parents become a source of embarrassment rather than solace. It makes sense that this is prime time for eating disorders. Obsession with weight offers a distraction. Extreme weight loss signals distress.

It also makes sense that rates of anorexia and bulimia spike in middle age, when many women again face emotional turmoil. Women over 30 now make up a full third of residential patients at the Renfrew Center, a Philadelphia treatment facility specializing in eating disorders. Divorce, grief, the empty nest — all can trigger illness if the individual possesses a genetic predisposition.

The onset of eating disorders is like the firing of a gun. Genetics form the gun. Cultural influences such as the fashion industry and familial attitudes about weight then load it. And intense emotional distress pulls the trigger.

Healthier figures on international catwalks may help to disarm the gun. However, of the more than 40 women I interviewed, only a handful had ever paid any attention to fashion. When they started starving, they were asking for help, not admiration. Those models who failed the test in Madrid need treatment, not rebuke.



Copyright 2006 Los Angeles Times