Experts at Stanford clinic say eating disorders continue to wreak havoc with young lives
by Diane Sussman
In characterizing the interaction between psychiatrist and eating disorders patient, Dr. Hans Steiner turns first to dreams, then to literature. "My one patient dreams she is a head, while her body is this tiny little tassel being blown about in the wind. "And I often feel like I am the catcher in the rye, trying to catch the tassels."
Steiner is the chief of child psychiatry at Lucile Salter Packard Children's Hospital at Stanford and one of the founders, along with Dr. Iris Litt, of the eating disorders clinic at Stanford.
The 18-year-old clinic is a regional center for the treatment of eating disorders in Northern California, drawing patients from local communities, the central valley and neighboring states. The clinic treats about 50 patients each year.
It is a number that shows no sign of diminishing.
Although an extensive study by Harvard University and Radcliffe College suggests that eating disorders are less common now than in the early '80s, levels remain "quite high." "People think eating disorders are gone," said Steiner. "But the only thing that's gone is the media."
In truth, eating disorders pose one of the biggest threats to the nation's adolescent population, along with HIV infection and violence.
According to recent studies, one in 10 college students, the overwhelming majority of them women, suffer to a significant degree from anorexia, bulimia or binge-eating disorder. Furthermore, body dissatisfaction and desire to lose weight are "the norm for more than 70 percent of young women," researchers found.
In the population at large, approximately 1 percent of American women are anorexic, while 2 to 3 percent are bulimic.
Numbers for men are far lower. Of the total number of anorexics, one in 10 are men, while one in five has bulimia.
Binge-eating disorder, which differs from bulimia in that it is not followed by purging, may be the most common disorder. While the total number is unknown, experts estimate that 30 percent of all obese people have binge-eating disorder. "This is a relatively new entry. A lot is unknown," said Steiner.
Even more ominous, what was once a disease of adolescence is now becoming a disease of childhood. Forty to 60 percent of high school girls diet to lose weight, one study found, and 30-40 percent of junior high school girls.
A recent Stanford study showed even earlier involvement in body image distortion and concern. The study found a fear of fat and preoccupation with thinness as early as elementary school. "This was boys and girls," said Steiner.
Stanford psychiatry professor C. Barr Taylor called the finding "amazing . . . shocking."
Earlier this month, Stanford received a $1 million grant from the McKnight Foundation of Minneapolis to continue the study. The second part of the study followed a group of fourth- to eighth-graders to determine how children's attitudes are affected over time. The third phase will develop and begin an educational program designed to prevent eating disorders.
As dramatic as the numbers are, Steiner cautions that they in fact be underestimating the problem. "People with eating disorders aren't out there telling the world they are starving or vomiting," he said. "They are highly secretive. Even their closest friends don't know."
Bulimics in particular are hard to spot. Unlike anorexics, they tend to maintain a normal or above-normal weight and eat normally in public. After a binge that may contain more than a day's worth of calories, they attempt to eliminate excess calories by exercising, taking laxatives or vomiting. Stricken with shame, they conceal their behavior from friends and loved ones, binging and purging in private.
Anorexics, too, excel at concealing their disorder. They hide their emaciated bodies beneath layers of baggy clothes and try not to draw attention to themselves by picking at their food or saying they have just eaten. No matter how thin they are, they think they are too fat. "To them, skin looks like fat," said Cari Anderson, clinical psychologist at the clinic.
That the disorders can be lethal or debilitating is not in dispute.
"It's starvation, with all the physical and psychological disturbances of starvation," said Anderson. "People do die of starvation."
In girls, anorexia can wreak long-term havoc on the reproductive and hormonal systems. Amenorrhea, or the absence of periods, is one of the first signs that a girl's reproductive system has broken down. "I am always jumping up and down and crying when one of our girls gets her period," said clinic nutritionist Grace Shih. "The girls get so embarrassed by me."
Anorexia also causes sterility, reproductive problems, stunted growth, dehydration and osteoporosis. "Plus, these things happen very quickly because the starvation is so short-term," said Shih. "You have a large weight loss in a very short period of time."
Bulimia has different, but equally serious consequences: dehydration, electrolyte imbalance, tear in the stomach lining, erosion of tooth enamel and reproductive problems. Some have died from a ruptured esophagus while vomiting.
Then there are the psychological consequences, said Steiner: depression and anxiety disorders in anorexics and depression and problems with impulse control in bulimics.
While all American woman are bombarded by images of impossibly slim bodies that few can ever hope to achieve, most do not develop eating disorders. "I managed to escape having an eating disorder, but I did not grow up without feeling all the pressure women face to be attractive and thin," said Anderson. "I still cringe when I see a scale."
So why do some succumb while others slide by? Researchers have found no single cause. "It's so many things," said Steiner. "The deep foundation of this has to do with your body and with the people you love and deal with. It's not just that you don't look right, or that this sticks out or that doesn't. This is one small incident layered over many."
"Food is just the outward sign," adds Anderson. "These are deeper issues of autonomy, self-esteem, individuality and family," said Anderson.
Two studies suggest an inherited tendency to the disorders. Still, tendencies need development. "These girls are anxious from birth," said Steiner. "If other things are (in place), you could have a problem."
"Other things" include strong cultural messages about external attractiveness, a family that reinforces those values, and the developing body at puberty. "Western culture tells you that women should look a certain way and families absorb that from the culture," said Steiner. "What gets laid down is that you are inadequate because you don't look like what the culture tells you you should look like. Then puberty comes."
Puberty is a particular trigger for anorexia. "Anorexia is about arresting puberty and staying there," said Steiner. "Life is becoming scary, and they don't want to go on. So they don't."
That is exactly the case of one girl who "went from nothing to a D cup overnight," according to her mother. "She lost 40 pounds in two months. She just said, 'I'm not ready for this body, I want to stay a kid."
Activities that stress physical appearance, such as ballet and gymnastics, encourage eating disorders. Alexandria, a 21-year-old with a six-year history of anorexia, only recently began to enjoy dance classes "for the movement, without thinking about how my body looked."
But for most people, the precipitating factors have nothing to do with wrestling or ballet. More likely factors are high levels of family conflict, a preoccupation with dieting, a tendency to withhold feelings and sexual or substance abuse. "For me, it's a variety of factors," said Alexandria. "It's the kind of person I am, and the way things are handled in my family.
"In my family, we tend not to be very open with our feelings," she continues. "Like my mother believes you shouldn't want anything, that you can stop yourself from having desires. So I always felt terrible if I had desires."
In general, anorexic girls tend to be sweethearts, what is known as "perfect little girl" syndrome. "I always tell people that if you have one child who is disruptive and one who is really, really good, the one who is really, really good is the one you have to watch out for," said Mo Chambers, a Mountain View masters swim coach who used to have an eating disorder.
Parents of these patients tend to be successful and emotionally distant. "Often you find the father who is maybe not so involved with the girl and the mother who is more on the traditional side," said Steiner. "And you have a family that is very concerned with appearances and success."
Whatever the cause, the process starts with a preoccupation about food and dieting. "Every eating disorder begins with a diet," said Steiner.
As time passes, the list of acceptable foods grows shorter. "They eat four things," said Shih. "Frozen yogurt, salad, bagels and rice cakes."
Numbers--weight, calories, grams of fat, minutes of exercise--become an obsessive focus of concern. "I kept a little book and wrote everything down," said Emma, a 14-year-old Palo Altan with anorexia. They are scrupulous to the point of counting calories in mustard, artificial sweetener and lettuce.
"They have this thing about 1,000 calories a day," said Shih. "They will eat 996 calories a day, or 999 calories a day."
They become nutritional experts. "They read more books on nutrition than I do," said Shih. "They know calories and grams of fat better than anyone else. And you can't argue with them. I tell them they need 2,500 calories a day, and they tell me I'm crazy."
If there is a value in it, it is control. "There were so many things I didn't have control over," said Alexandria. "My family. My social life. This was something I could feel good about.
"For the first time, I had a sense of power," she continued. "You're doing something so many other people can't do: lose weight."
That's the cruel, paradoxical hoax of it all, observes Anderson: "They start out thinking they are in control and then they find out the eating disorder is in control."
If they get admitted to the hospital, they don't want treatment. "Most seem totally bewildered by why they are hospitalized," said Anderson. "They have no idea how sick they are."
They thwart the staff and sabotage their treatment. They swap urine samples; conceal AAA batteries in their hair before weigh checks; pour nutritional supplement into plants and exercise in the middle of the night. "They hate eating; they hate the hospital; they hate us;" said Anderson.
"I have never had one come up to me and say, 'Thank you, doctor,'" said Steiner. "Well-meaning professionals have been known to become rabid. Here a nurse has people dying or in need of attention and here's this kid who won't eat."
They are given strict rules to live by: No more than eight vegetables a day. No nonfat products. No exercise. Don't want lunch? Then consider a nasogastric tube. "They really hate that," said Anderson, who admits the clinic rarely has to resort to that method of treatment.
To them, the well-meaning regulations are nothing more than the wholesale destruction of their greatest success. "It's an order to their day. It's what they are good at. And you are asking them to give that up," said Steiner. "And for what?"
Even when they are out of danger, they may not have a good answer for that question. "I do not like being sick. I did not like being that thin," said Alexandria. "But not really anything else I've done since then has come close. There's not a whole lot in my life right now that makes me feel powerful."
Long-term success, said Anderson, relies on forging a link "between feeling states and eating. They eat, or don't eat, because they feel out of control, or anxious, or any emotion they don't want to face."
"It's true," said Alexandria, "sometimes I get so full of feelings I have no room for food."
Fortunately, the long-term outcome is good, said Steiner. "They do come out of this. It's just the middle of therapy that's a mess."
Indeed, the former sweetheart may turn into pierced, tattooed hellion. "They are taking risks," said Steiner. "They are taking it apart before they can put it back together. In the meantime, everyone's upset."
Some families don't make it. "The mothers crumble and the fathers leave," said Steiner. "And the girl has even more to deal with."
A particular concern among staff and therapists is that society may no longer care as much. "There was a time when TV and newspapers were here every day," said Steiner. "Now it's old hat.
He doesn't want to have to spend his time convincing people--from patients to the public to insurance companies--that attention must be paid. "People always want to know why it takes so long to treat these people," he said. "It takes a long time because what you are doing is building a new little person. You are watching a life unfold."
Alexandria knows only too well the cost of giving one's youth to calorie counts and rigid exercise regimens. "I wish I could have that time back," she said. "I didn't really have a childhood. I would like to go back to 13 or 14 and do it over and make it right this time."
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