Knowing someone from the study would be calling me regularly makes me think twice about my own behavior. The consistency of the study leaders, especially Dr. Herzog, is like having a lifelong friend, who really cares, watching over your shoulder and watching your back. Knowing that my participation may help someone else, or even save a life, is another leason the study has helped me want to get better. -- Study Participant
In 1981, Massachusetts General Hospital opened its eating disorders unit. I had just finished my training in child psychiatry, and as the clinic's founder and director, I planned a team approach to treatment. Every patient would receive psychotherapy, medical monitoring and nutritional counseling, and many would need medication. I gathered a team of professionals, and we began to treat individuals with anorexia nervosa and bulimia nervosa.
Many of the patients and families who sought our help had struggled with the illness for a long time, some for nearly a decade. A number of them asked, "What will I (or my daughter) be like one or two or 10 years from now, whether I seek treatment or I don't? Will I ever get better?"
Unfortunately, we did not know the answer. So we designed a research study that would help us understand what happens to patients over time. But before we could launch our study, we needed funding. We submitted proposals to the National Institute of Mental Health (NIMH) in 1985 and 1986 and the feedback we received was positive -- but not positive enough to merit funding. Our 1987 application, however, was a big success! NIMH awarded us a grant -- and the "Longitudinal Study of Anorexia Nervosa and Bulimia Nervosa" was born.
We recruited 246 women to participate in our study. Those with anorexia were, on average, 21 years old, and those with bulimia were a bit older. We interviewed our participants frequently about their eating behaviors, their health, their school and work lives, and their social activities.
Did people improve? Yes. The majority of our participants felt better over time and many recovered, some after 20 years of illness. Even severely-ill patients with multiple hospitalizations made progress. But the road to recovery was rarely smooth. Along the way, participants tended to slip back temporarily into old eating patterns -- food restriction, binge eating, and purging.
What happend to people who did not get better? For a number of our participants, the disorder waxed and waned. For others, it persisted. Among the women who suffered a more severe course, some died prematurely. During the first 11 years of the study, 10 of the 136 women with anorexia died, and the suicide rate was 57 times that expected for gender and age. Many of the deceased had reported social isolation, difficulties getting along with other people, a history of trauma, and inconsistent employment or inability to work due to their eating disorder or depression.
What happened during pregnancy? We followed many of the women through pregnancy. Those who established healthy eating patterns before conception and maintained them throughout pregnancy were no more vulnerable to obstetrical problems than women who had never experienced an eating disorder. However, those who engaged in abnormal weight control practices during pregnancy opened the door to complications.
How did the women get better? All the women were in therapy at one or more points during the study, and many found therapy very helpful. Life experiences outside of traditional therapy were also beneficial, according to our participants. Some attributed their recovery -- at least in part -- to motherhood, emphasizing that raising children changed their priorities, diverted them away from weight concerns and built their self-confidence. Others described bonds with dogs, cats or other pets as healing. Still others mentioned their careers as playing a central role in their journeys from eating disorder to health.
In 2011, NIMH awarded us a grant to conduct 25-year follow-up interviews with the participants of the study. We are working hard on this project. Staying in contact with 246 individuals over 25 years has not been easy. Our ability to accomplish this is due in large part to the talents and enthusiasm of my research assistants, and I am profoundly grateful to all of them.
I extend my heartfelt appreciation to the study participants. I respect them tremendously, not only for fighting their disorders but also for sharing their perspectives with us, so that others struggling with these illnesses can benefit from their experiences.
For more by Dr. David Herzog, click here.
For more on eating disorders, click here.
If you're struggling with an eating disorder, call the National Eating Disorders helpline at 1-800-931-2237.