GAINING:
The Truth About Life
After Eating Disorders

GIVE EATING DISORDERS A NEW NAME – WINNERS!

Thank you, one and all, to everyone who submitted a new name for eating disorders! The diversity of ideas alone shows how complex these problems are – and what a grave disservice it is to pigeonhole them as “food and weight” issues.

Before I list the 5 names that spoke to me as the most right-on, I’d like to share the whole list. I think it reflects the difficulty of coming up with one label that applies to the wide variety of these conditions, especially when we consider factoids such as 1) most people who die of eating disorders do not die directly of starvation or obesity, but suicide; 2) weight is not always an indicator of an eating disorder; and 3) eating disorder behavior and thoughts often have nothing to do with food.

Here then, are all your suggestions, along with comments that you submitted to explain them. THESE are truly “food for thought”:

• Metabolic Manipulation Dis-order.
The initials, MMD, give it a sense of respectability.
• Starved Self Syndrome... SSS
• No-self syndrome
• Empty self syndrome
• Self-awareness escape condition
• TrEATable disorder
• "Undeserving" complex
• Dissociative eating syndrome
Named because we dissociate into food, either
avoiding it or finding it. We dissociate from painful
events and go into food thoughts
• Not-eating disorders
• Nourishing Syndrome
• Sustenance Deprivation
• Sustenance Support
• Feast/Famine Crisis
• Feast or Famine Defense
• Nurturing Reception
• Dissociative syndrome
(the mind and body are dissociated from one another)
• Maladaptive coping syndrome
• Deprivation addiction
• "Drowning to death in a sea or plenty"
It reminds me of a stanza from the poem The Ancient Mariner:
"Water, water everywhere and all the boards did shrink,
Water, water everywhere, nor any drop to drink."
I would change a few words to describe anorexia as:
"Food, food everywhere for one and all to eat,
Food, food everywhere, but none allowed for me."
• Genetic identity syndrome
• “S.E.A.S.” self evaluated anxiety syndrome
I have had an ED for 27 years and it leaves me washed
out like the sea can. Also, we make our own
evaluation of our worthlessness, nobody makes us hold
onto these feeling. In the air of hope, the tides can
always change, perhaps washing IN healing.
• Obsessive-compulsive Food Disorder
How many other disorders do you obsess over just the food. . .and almost nothing else?
• Food Dysmorphic Disorder
since we have a dysmorphia about the amount/type of food we put into our bodies.
• Food-focused Disempowerment Disorders

I shared these suggestions with several friends, both in and out of the eating disorders field. We all agreed that it is near impossible to find a single term to encompass conditions as different as anorexia and bulimia and binge eating disorders. It’s easy to see why they were lumped together around the single symptom of disordered eating, but this label does not even hint at the emotional, chemical, or genetic underpinnings of these conditions. Worse, this label has directly contributed to the trivialization of these illnesses by the general public, much of the medical establishment, and insurance carriers.

As one of you wrote to me:
“I hear young girls through grown women say, ‘I wish I was anorexic - just for a week.’ I remember being an adolescent and being obsessed with eating disorders. I would read everything about them at the library (we did not have the Internet), I would secretly read the ED section in our health books, and would read any magazine that had something about them on the cover. I wanted people to think I didn't eat (I did), and I thought it was symbolic of being good, in control. I wanted to be anorexic. Eventually it grabbed a hold of me and has not let go… Let's stop making it so glamorous.”

I heartily agree! That’s why I launched this contest.
Here, then, are the names that we believe most closely describe the underlying reality and internal experience of all eating disorders, whatever their shape, size, or duration. They do not wildly overlap with other broad conditions such as depression, anxiety, and personality disorders, and yet they also do not fasten on abnormal eating as the sole common denominator:

1. Metabolic Manipulation Dis-order (MMD)
2. Starved Self Syndrome (SSS)
3. "Undeserving" complex
4. Deprivation addiction
5. Feast or Famine Defense

Again, thank you to all of you who submitted entries. I’ll be in touch with the winners to send them a copy of Gaining. And feel free to share these alternative names with any of your friends or acquaintances who ask why people with eating disorders don’t just “gain (or lose) a little weight”!

Have a healthy, pro-active, and power-full Eating Disorders Awareness Week!

There’s No Accounting for Fashion

With the end of the 2008 spring fashion Season in Paris coinciding with Eating Disorders Awareness Week next week, it seems a good time to ask what became of the international designers’ grand promises to replace the look of starvation with a glow of health on the catwalks.

Last year, if you will recall, the anorexia-related deaths of two runway models (since followed by at least one more) prompted fashion week organizers on both sides of the Atlantic to vow with great fanfare to promote “the message that beauty is health.” Milan’s Chamber of Fashion issued a non-binding “manifesto” stating that design leaders had a responsibility to "creatively and constructively transmit positive aesthetic models as an instrument of prevention" of eating disorders. In order "to give value to a healthy, sunny, generous Mediterranean model of beauty," mannequins working Italian runways were to have a minimum body mass index, or BMI, of 18.5. That’s about 127 pounds for the minimum runway height of 5’ 9 1/2”.

The Council of Fashion Designers of America issued its own "Health Initiative," stressing voluntary measures to "create an atmosphere that supports the well-being” of models. Unfortunately, the key word was not health or well-being, but voluntary. The CFDA actually specified that it would not recommend models be required to have a physical or body-mass assessment.

In its defense, the CFDA stressed that fashion alone does not cause eating disorders. But that’s like saying that Las Vegas does not cause gambling.

It’s true that certain people are biologically predisposed to eating disorders, just as alcoholics and compulsive gamblers have a biological vulnerability to addiction. But modeling lures those prone to eating disorders the same way casinos attract high rollers. At least 40% of fashion models struggle with anorexia or bulimia. These disorders, however, have a higher mortality rate than craps or roulette – or, for that matter, alcoholism, depression, or schizophrenia.

The problem extends far beyond the runway. Of the 10 million American women and girls who develop eating disorders, many avidly study glamour shots of skeletal models for “thinspiration.” This is the real reason why the size of models matters.

So what happened to all that bold talk about designers’ responsibility?

I serve on the advisory board of the Academy for Eating Disorders. Earlier this month several of my AED colleagues called on CFDA president Diane von Furstenberg, CFDA Executive Director Steven Kolb, and Nian Fisch, chair of the CFDA Health Initiative, for an update on their implementation of the Initiative. We have yet to receive an answer.

“Their failure to respond underscores that the CFDA health panel was all for show--just lip service and empty promises,” said Cynthia Bulik, PhD, past-president of the AED. “If there’s no accountability, there’s no action.”

In Europe, supermodel Marvy Rieder, whose marVie Foundation aims to create a healthier working atmosphere for aspiring models, has noticed that designers are showing clothes even smaller this year than last. One model who dropped to a European 34/36 (equivalent to a U.S. 0) in order to qualify for the Milan shows was told she still was “too fat.”

“Agencies often do not agree on the strict measurements made by the designers,” Rieder told me, “but they don’t want to be put out of business so they tell the girls to lose weight if they want to do the shows.”

Of fourteen recommendations made last year by the Model Health Inquiry chaired by Baroness Denise Kingsmill, the British Fashion Council has chosen to implement just four: London Fashion Week will ban models under 16; no more backstage drugs, smoking, or champagne; models will be allowed to rest between shows at a staffed apartment; and maybe by next September's Fashion Week, the Council will begin model health certification.

Susan Ringwood, chief executive of the British eating disorders charity Beat, is fed up. "We want the fashion industry to put its words into action, to just get on with it.”

In a world where real women wear an average size 14, why does the fashion industry mount such resistance to more substantial models? When asked, most designers reply bluntly that skinny girls make their clothes look better.

Here, then, is the ugly truth that each of us should consider whenever we open the latest Vogue or check out what’s new on the catwalk: in the world of fashion today, looks matter more than people do. Style is literally to die for.

Why the OBAMA campaign spells HEALTH

As I stood before Michelle Obama, Caroline Kennedy, Oprah, and Maria Shriver at last Sunday’s Women for Obama rally, I was struck by the emotional strength of every point they made.

This campaign, Maria Shriver said, is really “about us, and what we can do when we come together.”

“The question in this race is not whether Barack is ready,” Michelle Obama agreed. “The question is, what are we ready for?”

“We have won the struggle,” Oprah said, “and we have the right to compete… free from the constraints of gender and race.”

“Each and every one of us can be an agent for change,” Caroline Kennedy told us, to which we, in our thousands, thundered back YES WE CAN!

Unity, Engagement, and Hope are the real watchwords of this campaign. They are also, in my opinion, key to our psychological and emotional health as individuals and as a nation. This is the real reason so many find Barack Obama’s candidacy so inspiring, but also why he is fighting a difficult battle.

The forces of fear are entrenched in this country, as evidenced by our epidemic rates of anxiety disorders, depression, substance addiction, eating and personality disorders. While the causes of these often intertwined conditions are enormously complex, most of them feed on fear -- of failure or shame, rejection or futility, loneliness, poverty, physical harm or death itself. Whatever its source, if persistent, pervasive, and unrelieved, fear is destabilizing.

That is why the exploitation of fear is such an effective political tool for those who wish to conquer by dividing us against each other and ourselves. Novelist Michael Chabon, in a Washington Post Op-Ed today, wrote eloquently of the resulting political anxiety disorder: “Fear tells us that ugliness, rage and brutality are the central facts of human existence, that decency and tolerance are luxuries on whose altar our enemies will be only too happy to sacrifice us.”
Fear, in other words, is the reason we will not trust, act, or come together even for our own good. For fear that we might fail or be disappointed, we dare not even hope. This is a recipe not just for apathy, but for despair.

Barack Obama dares us to recover from our national anxiety disorder. He reminds us that our health depends on our cultivating a sense of purpose, passion, connection, and trust. But we must not expect our candidate – or our President, for that matter -- to solve our problems for us, any more than we would expect our doctor to recover our mental health for us.
As Maria Shriver said Sunday, "WE are the change we've been waiting for."

Yes, we all hopefully answered back. We are.

ED NAMING CONTEST ENTRIES!



I’ve been so impressed by the early entries to the “Give Eating Disorders a New Name” contest that I’m hosting at http://www.eatingdisordersblogs.com/life_after_recovery/
I’d like to share them with you. These suggestions really speak to the true experience of this unique body-mind relationship.


The entrants have given me permission to post their ideas and comments so that we can inspire others in coming weeks to send their ideas to gainingcontest@gmail.com


Take a look and put on your thinking caps! The contest will continue until February 26. I am now gathering a group of eating disorders experts to help me pick the winners.


I really think there are terrific insights in these suggestions and comments. Read on:


From Julia Temple-Mcneill:
• “S.E.A.S.” self evaluated anxiety syndrome
I have had an ED for 27 years and it leaves me washed
out like the sea can. Also, we make our own
evaluation of our worthlessness, nobody makes us hold
onto these feeling. In the air of hope, the tides can
always change, perhaps washing IN healing.


From Tricia Kuchan:
• Genetic identity syndrome.
I understand that research is finally proving that genetics play a part in this devastating illness. I have been fighting for years for freedom and a life. I lacked an identity my whole childhood and it traveled with me until I found an eating disorder to claim who I finally was. It has taken a lot of hard work to
discover who I am and I am only just beginning.

We need people to understand that an eating disorder is not about food but about a destructive fight in our minds. It is hard to fight for recovery when we don't even know who we are fighting for.

It is a catch 22 because having an eating disorder is finally having an identity. Giving it up is the scariest thing because we feel like we are going back into that void of being nothing again. I truly believe the only way out of the disorder is slowly finding things that give us an identity outside of our disorder. Only then can we begin to let go of our devastating illness that in the end was never really our fault because we were genetically predisposed to this life of hell.


From Dana Leigh Tidwell :
• “Inappropriate coping syndrome.”
I hate being lumped into that category of an “eating disordered person”. Not only is it it I had for a repnaccurate, it is not placing the importance on emotions. It is not about the actual eating, it is about what is going on behind the fact we feel compelled to act out.


From Kate Semmens:
• “Dissociative syndrome” (the mind and body are dissociated from one another)
• “Maladaptive coping syndrome”
• “Deprivation addiction”
I am a soon to be 24 year old woman who has struggled with anorexia and related problems since 2002. I am now finishing my last semester in graduate school (masters) and will probably go on to get my doctorate, but I find that my eating disorder is both a coping mechanism and a hindrance that holds me back from achieving many things. There is much of my life I wish to change...

For instance, I have, in my own terms, money anorexia, where I have an extremely difficult time spending money on myself, accepting gifts from others, etc. I will go to the grocery store and even if I can convince myself to get a certain item my other side argues that it is too expensive. I also do not buy myself clothes, never go out to movies, restaurants, etc because it costs money and I do not feel I am worth the expense. I used to love riding horses but because it is a very expensive sport I have stopped. This also presents a problem in getting help and seeking out treatment, for my ED mind argues it is much too expensive and I will probably relapse and it'll be a waste. One cannot function in this world without spending money on themselves, so I know I must get over this.

Also, I've noticed that although I've managed to suppress most emotions, guilt and shame have not gone away and are huge issues in my life presently, almost to the point of paralyzing me. I know they are irrational but they are so overpowering at times.


From Marilyn Mandel:
• "Nourishing Syndrome"
• "Sustenance Deprivation"
• "Sustenance Support"
• "Feast/Famine Crisis"
• "Feast or Famine Defense"
• "Nurturing Reception"


From Laura Collins:
• "Not-eating disorders"
AN, BN, and BED share a common quality: erratic and restrictive eating patterns. I think that's a useful connection.
Beyond that, the real question is what category to put these illnesses: anxiety disorders, personality disorders, endocrine disorders, autoimmune disorders?


KEEP THEM COMING, EVERYONE! WE CAN MAKE A DIFFERENCE.

With great thanks to all of you,

Aimee

Send your ideas to: gainingcontest@gmail.com

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