How Many Must Die Before We Help? Eating Disorders Prevention and the Role of Congress

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How Many Must Die Before We Help? Eating Disorders Prevention and the Role of Congress

Senate Briefing - June 27, 2002

Featured speakers:

Mike Watt, Father

Kate Dillon, Plus-size Model and Activist

Margo Maine, Ph.D., Author and Activist

Sarah Mason, Eating Disorder Survivor

Wayne Miller, Ph.D., Professor of Exercise Science and Nutrition, George Washington University

Jonelle Rowe, M.D., Senior Advisor on Adolescent Health, U.S. Department of Health and Human Services

Congressional Host:

Senator Hillary Rodham Clinton

Mike Watt When Your Child Dies of an Eating Disorder: A Father's Story

Mike Watt, Father

In July 1999, at 14 years of age, Kristen Watt tragically died from bulimia. She was known for her beautiful smile, zest for life and love for other people. Kristen was an outstanding athlete and a conscientious student. Yet, behind all of this was a young woman secretly battling a horrible illness and she eventually lost. The lack of understanding about eating disorders and the immense suffering they cause prompted Mike’s family to speak openly about her life and death to prevent others from experiencing such loss.

Important Facts:

You can die from an eating disorder.
Anorexia has the highest death rate of all mental disorders.
Eating disorders most often strike youth. It can happen as young as 6 years old.
Approximately 8 million people suffer from eating disorders.
It’s not just about food or being thin.
Eating disorders are complex and need to be understood.

Margo Maine

Helping Young People Develop A Healthy Body Image
Margo Maine, Ph.D., Author of Body Wars: Making Peace with Women’s Bodies

I am a clinical psychologist, specializing in the treatment of Eating Disorders for over 20 years. Graduate school and clinical training never prepared me for the heartbreak of my work. Last Sept., I attended the funeral of a patient, a young woman who lit up the world with her kindness, compassion, and artistic abilities. My arms wrapped around another brilliant and special young woman who is also fighting for her life.
I deeply appreciate Sen. Clinton’s interest in the prevention of eating disorders, osteoporosis, and obesity. These problems do not discriminate – they now affect every social class, ethnic and racial group in the US. I have treated some of the wealthiest families in CT and families on Title19. Unfortunately, angst about one’s body, appearance, and weight have become the norm and in some cases will result in tragedy.

At 90 pounds of solid muscle and almost almost 5 ft tall, Christy Henrich asked why she was not chosen for the ’88 Us Olympic Team. The answer: she was too fat! Immediately, the language of fat became her explanation for every negative feeling she experienced. She spiraled into a severe case of AN/BN and this vibrant, dedicated, loving young woman died 5yrs later at the age of 21. Today you will hear many statistics- remember: STATISTICS ARE PEOPLE WITH THE TEARS WIPED AWAY. Put a face on each of these numbers and you will agree that we cannot wait – we need to fund prevention now.

The language of fat is invasive and insidious. As a result, conservative estimates are that as many as 8% of high school and college aged women will suffer from either anorexia nervosa or bulimia nervosa in their lifetime (APA, 2000) The number of young men is also increasing and the age at which symptoms develop is becoming younger and younger. I have treated children as young as 8 or 9 with the full spectrum of anorexia nervosa. Without hospitalization, intensive outpatient treatment and family therapy, these children would die.

Subclinical Eating Disorders, especially in women, also continue to increase. Because these behaviors are so common, we cannot develop completely accurate data regarding their incidence rates. Research and clinical experience demonstrate that negative body image and dieting are both precursors to ED. To estimate the number of college-aged women who were engaging in overly restrictive dieting, the National Eating Disorder Association ( a member of the Eating Disorders Coalition) held focus groups on college campuses. When asked if they were dieting, the response of these young women was a loud, resounding “NO.” However, when asked more detailed questions like “Do you count calories and fat grams every time you eat?’ “Do you skip at least one meal a day?” “ Do you exercise to burn up the calories you just ate?” or “Do you take dietary supplements or other pills to lose wt?” their answers were “yes”. Still, they did not identify themselves as “dieting”. Nor did they see themselves potentially at risk to develop an eating disorder.

Not only are these behaviors and attitudes now the norm for college-aged women, but they are even seen in very young children.

From Body Wars: Making Peace with Women’s Bodies, by Margo Maine, Ph.D., Gürze Books, 2000

For many, this early caloric restriction and overemphasis on weight and food will lead to serious ED, perhaps to obesity or osteoporosis, having a lifelong effect on their health and well being. We must attack this issue through prevention programs. The costs otherwise are far too high. Clinical eating disorders affect every system in the body: They are serious, even lethal conditions. The mortality rate at 5yrs after diagnosis is 5%, but 20 yrs after symptoms emerge, the mortality rate is as high as 20%. The death rate is 12 x the expected for women aged 15-24 and the suicide rate is 75x greater.

These problems begin in childhood and they can be prevented. We absolutely must fund broad-based, developmentally appropriate prevention programs that Sen. Clinton’s bill promotes. Fortunately , we have a body of research and knowledge on which to base these efforts. The National Eating Disorders Association has completed research showing the effectiveness of prevention.

For example, 222 4th- 6th graders received instruction in the school-based curriculum called Healthy Body Image/ Teaching Kids To Eat and To Love Their Bodies Too. They showed significant improvement in their knowledge about food and dieting, in body image, and in self esteem. This program targets children at a time when body image, attitudes toward food, emotional expression and coping mechanisms are still emerging. It emphasizes the formation of identity from a diverse set of resources so children develop competency and interests aside from external image alone.

Another study by the National Association of Eating Disorders showed promising results for teenaged girls involved in the GOGIRLS project. 162 middle and high school aged girls in various parts of the US, participated in the program which focuses on media literacy and self concept. Results of this pilot study showed a reduced risk for ED, greater self-acceptance, feelings of empowerment, a reduction in the desirability of thinness, critical awareness of the media, and a belief that they could influence their environment in a positive manner.

The field of ED is blessed with many rigorous and outstanding researchers, including DRS Niva Piran, Michael Levine, Linda Smolak, Lori Irving.. Experience informs us that prevention programs that just look at the negative risk factors (the “just say no approach”) do not work. For example, when I ask a new patient what made her decide to engage in ED symptoms. I usually hear “ I read an article about it” or “We had a talk about it in health class.” Simple educational programs – the usual approach-cannot prevent ED. In fact, they can help to trigger symptoms in a vulnerable student. Experts in prevention agree that self-esteem and social competence build the personal strengths needed to resist negative stressors.

ED are very complex, multidetermined conditions. They are coping strategies, so we must address the causes and not just the sxymptoms. For example, food is not just a nutritional substance. It always has personal, familial, social, and cultural significance. Understanding the content of food is only part of the task..Understanding our relationship to food, how we cope with feelings, the pressures we experience regarding our bodies are critical components to prevention.

I have developed a model for prevention called "The 3 R’s for People Who Care About Girls:"

The REALITY of girls lives today is that they are under constant pressure to be perfect and to perform in every arena. They grow up in a cultural context that equates a woman’s success with adherence to unrealistic standards for weight, shape and appearance. To adapt to this culture, girls inevitably become anxious and dissatisfied with their bodies.

Only with adequate funding, can we implement the broad-based prevention programs necessary to reverse the toxic and erroneous cultural messages regarding weight, shape, food and body image; to end the social support for health-endangering wt control, to develop media literacy and related skills; and to assure that not one more girl dies because she was taught to translate her feelings into the language of fat.

My name is Sarah Mason and I’m here today because I suffered from Bulimia Nervosa for more than half my life. It took me over 18 years to get to the point where I could stand up here and share my story. But in order to talk to you about who I am today, I need to speak to you about who I was. So here’s a page out of my old life.

One Monday Morning
Home for the day. Sick with the flu, cold, broken appendage, whatever. Get up. Straighten up the room and take a shower. Clean up the kitchen. Watch TV. Feel hungry. Look in refrigerator. Nothing. Hunger increases. Get dressed. Go to the supermarket. Buy box of brownie mix, bag of Cape Cod potato chips and jar of honey roasted peanuts, strawberries, and grapes. Answer a call on my cell. – long functioning conversation that involves laughter and lucid thought. Hang up. Get home. Don’t even bother putting groceries away. Pull out mixing bowls. Phone rings - Once again, well-functioning conversation. Show off my multi-task skills by mixing the brownie batter while conversing. Clean up. Go watch TV. Eat everything I bought except the fruit. Wait a few minutes. Get up. Go to the kitchen. Methodically clean mixing bowl. Sprint upstairs. Get a ponytail holder for hair. Strip down to underwear while running back downstairs leaving clothing strewn across the room. Go to bathroom. Throw up several times. Completely sanitize bathroom. Go upstairs. Take shower. Walk downstairs. Go back to kitchen. Take out strawberries and grapes from refrigerator and glass of seltzer water. Sit down in living room. Sink into chair for a few hours until the craving succumbs me once again. Repeat process.

This ritual shrouded my life for over 18 years. I would get this feeling and nothing could make it stop. All I could think about was getting in the car and getting the brownie mix, or whatever my food drug of choice was at the time. I was completely focused on that one goal. Nothing else mattered. It was as if I were programmed by one of those hypnotists—who planted the image of some particular food in my head—and once I heard its name, I would be compelled to stop what I was doing and rush out to buy it.

Thus, going to the supermarket—a simple routine for most people—to me was like a drug addict walking into a crack house. When I finally got my fix, I was relieved. Saved. But that feeling didn't last long—maybe a few minutes before I starting getting the itch. The clock was always ticking in my head how long before I am able to get rid of this horrible feeling of guilt for all I’ve eaten. And then suddenly that became the focus of all my energies. But it wasn't a nervous focus. My response was systematic.

The cleaning, in particular, always went hand in hand with the binging and purging. And, as time went on, I grew increasingly more compulsive about cleaning. Yet it was unbalanced. If I left a few pairs of pants hanging over my bedroom chair, the bed would remain unmade. But if I felt compelled to put the pants away, I’d have to reorganize my jewelry boxes. This tendency toward obsessive-compulsive behavior I’ve found to be common with bulimics. It fits perfectly into the up-and-down, all-or-nothing pattern that imprisons us—a cycle that trapped me for so many years and kept me from truly living my life. Even at my most eloquent I could never fully illustrate how deeply I suffered.

I functioned to such a high level that neither my friends nor family were aware of what I was doing. But the shame of it was an unbearable burden. And I wasn’t able to do anything I genuinely wanted to do consistently.

My eating disorder started when I was 15, but it really began somewhere else. Somewhere back when the little girl who thought she could fly suddenly lost her wings.

When I was a child I was able to leap tall buildings with a single bound. I had no fear, no inhibitions. My talents just screamed out loud. Soon after my 13th birthday my father left. It devastated me. Things were shifting all around me. The bubble I lived in for so long had finally burst and all those things I’d never seen before were suddenly visible.

There were so many things going on for me. Let’s face it, 13 ain’t pretty. Middle school was a nightmare. Everything was changing so rapidly. I had emotions I’d never known. Body parts I’d never seen. I just wanted someone to help me figure it all out. But my father wasn’t around, my older sister and brother—whom I adored and depended on for emotional support—were away at school. I was left alone with the responsibility of taking care of my handicapped mother. She had been stricken with polio at age three and, as a result, walks with the aid of crutches and braces.

My mother is an incredible woman. And I've never questioned her love for me. But being left alone at thirteen with a disabled parent would not be easy for anyone. And it was not easy for me.

It wasn't so much that having a disabled parent was difficult. The problem was that I felt that I couldn't acknowledge that life was different because I had a disabled parent. Any normal teenage activity became an affront to everyone. I couldn’t rebel like a normal teenager. How could I after all that my mother had been through?

I felt very much alone and unable to express myself. It was easier to be a victim than deal with the guilt of surpassing my mother physically. After awhile I started to doubt my capabilities; that I couldn't pass a math test or solve a chemistry problem. I would embarrass myself if I tried out for the soccer team. I became afraid of everything. Symbolically, I disabled myself.

Everyone in my family was so incredibly uncomfortable by anything that represented the idea of overindulgence. So instead of hearing, "You can be anything you want to be", I heard, “That's not realistic. Don't bite off more than you can chew. You need to know your limitations”. As a result, I developed a restricted view of my own potential.

My eating disorder was a release from all of this. It was an easy way to feed myself— physically, emotionally, spiritually and without feeling guilty. What my unsophisticated mind failed to realize was that, ultimately, there was no escape from the guilt. So I fell into a seemingly endless cycle of binging and purging. Binging would save me from all the restrictions I imposed on myself.

It's taken me a lifetime to regain the spirit I had as a child. The spirit that was invincible and believed in all of her dreams. And it wasn’t a revelation. I didn’t wake up one morning and say, “That’s it, I’m done with this bulimia thing.” It took years for me to recover. And like alcoholics consider themselves to always be alcoholics, sober or not, I consider myself to be bulimic, purging or not.

My early experiences with therapy were a disaster. If you saw the film, GIRL INTERRUPTED, then you saw one of the institutions I briefly bunked in. I was girl interrupted and girl alone as I was the only one on the unit with an eating disorder. They had no idea what to do with me. They gave me a long list of statistics and facts and explanations for Bulimia and Anorexia—based on not much, as there was hardly any research at the time. They lumped me together with other girls my age who were paranoid schizophrenics, manic, suicidal, and drug dependant.

It was a frightening experience. Nobody wanted to get to know what was really going on with me. They just wanted to medicate and study me. And when I left institution after institution, I’d gained no tools to help me find my way out of this endless cycle. I didn’t even understand myself why I was doing it. I listened to them tell me that I was obsessed with being thin and distraught over my father leaving. But that wasn’t really what was going on with me. It certainly wasn’t about weight. It was about restriction, guilt, and fear. And not having the support I needed to find my way back to my dreams.
It wasn’t until my late 20s that I found not only a great therapist but also someone I consider a mentor. The only mentor I’ve ever had. She took the time to really discover who I was and helped me regain my voice.

I believe every body that suffers from an eating disorder to have a unique story. But I also believe that a common factor largely overlooked is a self-imposed or pre-conditioned restrictive thought pattern impairing ones ability to take a real bite out of life, if you will.

My years suffering in silence with this disease wasted so much time. Time I could have been writing, dancing, living. I’ve had numerous health problems including kidney stones, ulcers, chronic fatigue and several broken appendages – one of which ended my professional dance career. The accident cannot directly be attributed to the bulimia but I consider it a result of my inability to take care of myself. And the fact that I did not go back to dancing, I can most definitely attribute to my bulimia and the lack of confidence instilled in me.

I promised myself if I ever beat this disease I would use my experiences to help others avoid suffering as I did. What I’ve tried to do with Payson Road is to guide people back to the things that at their core inspire them. We take the focus off their weight. Yes, it is an issue and society certainly plays a role in perpetuating the problem. However, I feel that to truly prevent eating disorders from continuing to grow in these vast numbers, we need to get beyond the band-aid of the troubled body image and institute new programs that will help support people before the cut gets too deep.

At Payson Road we do not offer counseling, merely a place for people to explore their creativity and take the focus off their disease and put it back onto themselves. Our mission, expanding awareness and education of eating disorders and advancing recovery through support of creative statement best describe this.

We achieve this through several unique programs. The most popular of which is our monthly Poetry Wall that anyone can contribute to. It has been enormously successful. Additionally, we have three editorial columns, a mind and body healing program and recovery exercises—including a program based on Zen principles and martial arts called the Butterfly Fighting Circle—in which participants earn their belts by consistently doing things that make them happy. As simplistic as that sounds, many people who suffer from eating disorders are so wrapped up in their disease that they have completely lost touch with the things that they love to do. It has taken some people months to accomplish two days in a row doing one thing that makes them happy.

One of my favorite programs at Payson Road is the Creative Collective Workshops. The workshops are for kids and adults. The camp for kids combines many different artistic mediums—acting, writing, singing, dance, and visual arts. We hope to support children’s creative spirit early so they can discover how much more they have to offer than an eating disorder. The adult workshops, called the Art of Healing, include a discussion group, creative writing exercises, improvisational acting exercises and a yoga session. These and many more programs on Payson Road are small steps toward bringing an end to a problem that has gone unnoticed, un-funded, and unsupported for too long. I believe it’s time for everyone to step up to this plate and make a change. For it pains my heart to think of another young man or woman, so rich with promise and talent spending their life with their head over a toilet bowl when what they really deserve to do is fly.