Think anorexia went out with big hair and legwarmers? Think again. Not only are anorexia and other eating disorders still around, they’re worse than ever.
They seemed to come from nowhere. Descriptions of “wasting disease” appear as far back as the 12th century, but it wasn’t until the 1970s that, trickling through the cracks between huge news stories about Roe v. Wade, Patty Hearst and Pol Pot, we started to hear about a small number of girls—young,well-to-do girls from good families who had everything to live for, yet seemed determined to starve themselves to death.
And then they seemed to be everywhere. In the 1980s, television specials covered eating disorders—primarily anorexia—with intense and morbid interest. New Haven native Karen Carpenter’s death from heart failure brought on by anorexia in 1983 fanned the flames.
But then, like a successful virus, eating disorders mutated. They diversified by age, gender, method, geographic location and class, spreading from the small original pool of rich, educated, adolescent girls living in the First World to males, very young children, athletes, middle-aged mothers, island populations. And ironically, with that loss of focus came the misperception that eating disorders were on the wane.
“Eating disorders are still a big problem—much more of a problem than they were in the ’80s, for sure,” says Jennifer Smith, who was the director of the Walden Behavioral Care clinic in South Windsor for its first six months and is now a consultant. “It continues to be startling to me that it’s not more in the forefront of people’s minds.”
According to research by the National Eating Disorders Association, nearly 30 million people in the United States suffer from eating disorders. “These are not rare conditions,” says Margo Maine, a clinical psychologist who started the eating disorders program at Newington Children’s Hospital in the early 1980s, ran the eating disorders program at Hartford Hospital’s Institute of Living (IOL) for eight years and is now in private practice in West Hartford. “But despite the fact that eating disorders have grown in numbers and have started to affect people we thought were immune,we still don’t pay much attention to them. That, to me, is the mystery: How we have decided to accept that eating disorders just are, instead of realizing that they are a major public health problem.”
Despite their prevalence, in many cases those suffering from eating disorders have limited treatment options. In Hartford, until last year the only local choice was the IOL program. Though long-lived—opened in 1987, it was one of the first programs in the country—it is small, offering no residential component and serving only females and adolescent boys.
Center for Discovery New England, a residential home for adolescents with eating disorders, opened in Southport in September. Center for Discovery has 10 other facilities in California and Washington. All, like the Southport location, are housed in an actual home in a residential setting rather than in a hospital or clinic. The center has a small number of beds, and is open exclusively to girls and boys ages 11 to 17.
Closer to home, September also brought the opening of the Walden Behavioral Care eating disorders treatment center in South Windsor. Walden has four eating disorder clinics in Massachusetts, one of which offers residential treatment. The South Windsor facility, located in the Eastern Connecticut Health Network building, offers partial hospitalization and intensive outpatient programs for adolescents and adults.
Like most centers, Walden treats all types of eating disorders, both the classics—anorexia and bulimia— and the ones that fall, in medical parlance, under the term EDNOS, or “eating disorder not otherwise specified.” That includes anorexic and bulimic behaviors that don’t reach the established thresholds for official diagnosis—an anorexic who is severely underweight but has not lost her period, for example, or a bulimic who purges less than two days out of the week. One of the most common EDNOS is binge or night eating, which Smith says is “completely underdiagnosed and undertreated.”
Fortunately, binge eating disorder became a recognized specific diagnosis with the March release of the DSM-5, the latest edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. “That creates a higher level of recognition and the need for treatment, especially with the insurance companies,” says Stuart Koman, president and CEO of Walden. “But we’ve been treating this disorder for at least the last five years.”
Most people who are bingers or night eaters are over 40, and have been struggling with the disorder as long as they can remember. Some have gotten bariatric surgery,which is a dangerous procedure on its own, but much more so if the underlying psychiatric issue remains untreated and the patient continues to binge. “You can’t cure a psychiatric condition by surgery,” says SaraNiego, medical director of
the eating disorders program at IOL.
And then there is the “fat” stigma. While the frail frame of an anorexic incites concern and alarm, binge eaters are often dismissed as people with no self-control who “just haven’t tried the right diet,” Smith says. Because of that, binge eaters, like bulimics, often hide their disorders, eating in secret, often late at night after everyone is in bed.
But while the compulsive eating might be kept secret, the shame is all too public. Smith recalls one woman who “had literally been the poster girl for bariatric surgery.” She was an employee of the hospital that performed the surgery, and the hospital made up posters of her to show her dramatic weight loss. Then she gained the weight back. “Every day, she had to walk in and pass by those photos of herself,” Smith says. “Can you imagine? The daily humiliation she experienced was just intense.”
Up to 50 percent of people who are pursuing bariatric surgery and 20 to 40 percent of people who are overweight have binge eating disorder, yet treatment options are few.
To address this need, Walden recently added 1,000 additional square feet to the Connecticut facility, which will house a center for binge and night eating.
While some psychological disorders can be measured and medicated, eating disorders are a mysterious, multifaceted combination. Niego calls them a “bio-psycho-social condition.”
Though scientists have not established a causal link between any one genetic factor and the appearance of an eating disorder, there’s usually some kind of predisposition in the family, such as obsessive-compulsive disorder, anxiety, depression or bipolar disorder. Many have experienced some sort of trauma, from bullying to sexual abuse. And then there is the social aspect, which is illustrated most glaringly in the fact that in the last 40 years, eating disorders have proliferated to more than 40 countries worldwide. “It’s not a First World problem anymore,” says Maine. “It has totally globalized.” And that globalization has a lot to do with the globalization of media influence.
Medical anthropologist Ann Becker conducted a study in Fiji in the mid-’90s, just as satellite television was becoming available there. In 1994, when Becker initiated the study,which focused on how women responded to TV, “food was celebrated, a big body was seen as an advantage, and there was no talk of diets,” says Maine. In 1997, after three years of 90210, “all of a sudden there were eating disorders and dieting—women were not liking their bodies anymore. It was just amazing. As a culture, we have just become crazy about what a woman’s body should look like.”
Eating disorders have not only globalized, they have also infiltrated demographics previously considered “safe.” It used to be thought that if a girl made it though her teen years without an eating disorder, she would never develop one. But an increasing number of women who ate normally throughout adolescence are being diagnosed in middle age.
And those are just the ones that come forward—plenty of others fly under the radar. “Adult women with eating disorders don’t get identified in the health care system whatsoever,” Maine says. “Physicians are so immersed in the war on obesity that if a woman comes in and has lost weight, it’s only seen as positive.”
And eating disorders are less often a single diagnosis. “It used to be clean,”with kids diagnosed with just anorexia or just bulimia, says Paula Holmes, clinical program director at IOL. Now, she says, as much as 60 to 70 percent of people who are admitted to the program with an eating disorder also have a substance abuse issue, which makes them even more difficult to treat. And then there are the “drunkorexics”—kids who skimp on calories during the day so they can drink at night.
Eating disorders are not only varied, they’re also stubborn. “Eating disorders take some time to recover from, and you need a system of support that goes beyond any single level of care,” says Koman. “It may take three, four, five years, and they may go into lots of different programs in that time before they are able to extricate themselves from the series of things that are causing the eating disorder.”
Because of the dearth of nearby treatment centers, most of those multiple programs have been far from home, in Florida, California, Arizona, Oklahoma. Now, with more local options, for some, recovery is that much closer.