(Republished with permission from the St. Louis Post-Dispatch. This article originally ran in the Health & Fitness section on Monday, August 18, 2008)
By Cynthia Billhartz Gregorian St. Louis Post-Dispatch
By Brittanie Williams/St. Louis Post-Dispatch
Dr. Cheryl Bergin, who was anorexic for 14 years, says that "it was nothing less than a miracle that I changed my life around." Bergin, an ophthalmologist, is working on a project she calls "Hungry Eyes," which researches the effects on eyes due to anorexia.
Twenty years ago, when Cheryl Bergin was a teenager and in the throes of anorexia nervosa, she weighed a mere 54 pounds.
Tiny as she was, Bergin made big demands.
Whatever food she ate, her mother, Carol, had to eat twice as much. She always insisted on specific types of meals and preparation.
"If it wasn't all natural, she wouldn't eat it," said Carol Bergin of Fenton. "She'd get on kicks where she only wanted hard-boiled eggs. She'd watch everything I did. No butter or certain seasonings, and I couldn't fry anything. Anorexics become very manipulative with their families. It was like walking on eggshells."
In the world of anorexia nervosa, medical experts will tell you, the Bergin family's experience is common.
As a means of coping, exhausted and frustrated parents acquiesce and often back off from admonishing or discouraging their child's unhealthy behavior. But that only encourages the anorexic behavior, says Dr. Denise E. Wilfley, professor of psychiatry, medicine and pediatrics at Washington University.
For years, anorexics were hospitalized and force-fed as a means of treatment. Success rates were low, as the patient would often go home and relapse.
In recent years, studies involving individual and family therapy have shown a higher rate of success.
So it is that researchers at Washington University School of Medicine are looking for local families with a child between ages 12 and 18 suffering from anorexia nervosa to take part in a 16-week-long study that will compare two types of family therapy.
One will teach families "re-feeding." It will include a session where a counselor observes a family meal to determine how its dynamics have changed and how effective parents can be at encouraging their children to eat adequate amounts of food.
The other therapy will also involve family counseling, but with an approach that assumes a family has a "set point" where it functions best. From there, they teach the family how to best deal with normal adolescent issues, such as individuality, privacy and sexuality, which may be fueling the disorder.
Wilfley, lead investigator on the study at WU, said the two therapies take very different approaches.
"One goes right at the eating disorder while the other works to navigate adolescent stressors," she said. "We tell Mom and Dad that we need to get them on board. They are an important part of the solution. This study will determine which form of counseling works best."
The study is being funded by the National Institute of Mental Health and will take place at six medical sites nationwide and in Toronto. The goal is to study 240 anorexia patients and their families, making it the largest NIH-funded treatment study of this disease.
Researchers have conducted dozens, perhaps hundreds, of studies on eating disorders in general, Wilfley said. But only 11 controlled studies that deal strictly with anorexia nervosa in adolescents have ever been done worldwide.
While it's the deadliest of all psychological disorders and 75 percent of patients never fully recover, it's also relatively rare. Only one in about 200 patients with eating disorders are strict anorexics. They don't binge and aren't bulimic. They simply starve themselves.
CARROT STICKS AND FAST FOOD
Dorothy Van Buren, a research assistant professor of psychiatry at WU, will counsel families as part of preliminary behavior family therapy sessions that look at mealtime dynamics, which is unique to this study.
During preliminary counseling sessions, Van Buren noticed families showing up with baggies full of carrot sticks for the anorexic and sacks of fast food for everyone else.
"The behavioral therapy is designed to help families find ways to break that cycle," Van Buren said. "It encourages and structures the family situation so that eating is expected."
That might require sitting at the dining room table with the child, gently coaxing her to eat one more bite to meet the eating plan discussed in therapy.
"It can be exhausting and nightmarish," Van Buren said. "But we tell the parent, 'We realize you have been through an incredible amount already. But you will win and you can do it. Just hang tough.'"
Wilfley says systems family therapy has been used for years to treat other behavioral and psychological disorders among adolescents, but this will be the first time it will be used in a controlled study for eating disorders.
Sessions will including family discussions about the adolescent's life and developmental issues and concerns, as well as any positive parenting strategies, such as improving communication.
Just as parents of anorexics often back away from issues surrounding food, they also tend to avoid discussing other important life issues for fear of pushing them away, Wilfley says.
"So it's teaching the parents to talk in a positive manner that's supportive. Again, it helps the parent become part of the solution in that regard," Wilfley says.
An added benefit to family counseling is that it's much less expensive than in-patient treatment, which can run $3,000 to $5,000 a day.
OUT OF CONTROL
Dr. Cheryl Bergin, now 36, of Ballwin, was hospitalized five times during her teens (pictured at left at age 17). It was expensive and she always relapsed.
Her personal life was a rat's nest of problems and trauma beyond her control. She'd been molested by a male relative. She'd suffered a fractured back while competing as a gymnast. Her grandmother, whom she was close to, died. Her best friend tried to commit suicide. And her dad sank into deep depression and alcoholism.
Restricting her eating was the only thing she could control.
"I would come out of the hospital and immediately stop eating again because I would be put back in the same environment that triggered it," said Bergin, who hasn't practiced anorexia for more than 10 years.
She overcame the disease while attending St. Louis University and getting treatment for obsessive-compulsive disorder. She's since become an ophthalmologist and public speaker on the topic of anorexia.
Her mother, Carol Bergin, thinks recovery began when her daughter moved into a dormitory, forcing her to manage her own life and preventing her from manipulating her family. The Bergins also attended family counseling, which helped quite a bit, Carol Bergin says.
"As we found out with her illness, you're afraid to talk about it and open up about things," she says. "Communication completely breaks down, because you don't want to upset her."
Today, Cheryl Bergin has a standing date with her parents to eat breakfast every Sunday. They all wish experts knew more about family counseling when they were dealing with anorexia. One or both types would might have helped.
"If we would have had help as a family, I think it would have made a big difference," Carol Bergin says. "It may not have sped up her recovery, but it would have helped us know how to react to what she was going through."
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