How sufferers, their families, and our culture at large think about eating disorders sets the agenda for treatment, research, and funding. Until a 2008 lawsuit in New Jersey established that anorexia and bulimia were biologically based mental illnesses, it was legal for insurance companies to deny necessary and lifesaving care. The message to sufferers? You're not that bad off. You're just making this up. Get over it.
Too many people can't. Eating disorders have the highest mortality rate of all psychiatric illnesses. Up to 1 in 5 chronic anorexia sufferers will die as a direct result of their illness. Recovery from anorexia is typically thought of as the rule of thirds: One-third of sufferers get better, one-third have periods of recovery interrupted by relapse, and one-third remain chronically ill or die.
Although research into eating disorders is improving, it is still dramatically underfunded compared to other neuropsychiatric conditions. The National Institute of Mental Health estimates that 4.4 percent of the U.S. population, or about 13 million Americans, currently suffers from an eating disorder, and eating disorders receive about $27 million in research funding from the government. That's about $2 per affected person, for a disease that costs the economy billions of dollars in treatment costs and loss of productivity. Schizophrenia, in comparison, receives $110 per affected person in research funding.
The lack of research funding means that it’s been difficult to develop new treatments for eating disorders and test them in clinical trials. Several types of psychotherapy have been found effective in the treatment of bulimia and binge-eating disorder, although many sufferers have difficulty maintaining recovery even with state-of-the-art treatment. Thus far, no therapies have been clinically proven for adults with anorexia. Because many of those with anorexia are scared of the idea of eating more and gaining weight, they tend to be reluctant to show up for treatment and follow through with a clinical trial. Researchers have found a type of treatment known as family-based treatment, which uses the family as an ally in fighting their child’s eating disorder, to be effective in children, teens, and young adults with anorexia or bulimia.
The message from AED and BEDA is technically correct: More and more children are dieting, whether in response to thin models, obesity prevention efforts, or both. Dieting is potentially dangerous because food restriction can set off a chain of events in a vulnerable person's brain and body. For most people, diets end after a modest weight loss (and are, more often than not, followed by a regain of the lost weight, plus a few "bonus" pounds as a reward for playing). For the 1 percent to 5 percent of the population that has a genetic vulnerability to an eating disorder, that innocent attempt at weight loss, "healthy eating," or other situation that results in fewer calories being eaten than necessary, can trigger a life-threatening eating disorder.
However, focusing on purported cultural "causes" of eating disorders leaves out the much bigger, more multifaceted picture of what these disorders are. Eating disorders result from a complex interplay between genes and environment; it's not just culture. Yet most media coverage of eating disorders focuses on these types of cultural factors. Well over half of the eating disorder stories I see are about celebrities. Celebrities suffer from eating disorders, too, but they are a small fraction of the total number of sufferers out there. Eating disorders aren't solely about wanting to be thin. They aren't about celebrity culture or the supermodel du jour. They are real illnesses that ruin lives.