The year was 1988, and I was a college student on my junior year abroad, traveling aimlessly through the Middle East and Europe. My backpack was crammed with shorts and T-shirts, bathing suits and sarongs, my Walkman and Grateful Dead tapes. And oh, yes, a scale, buried deep beneath layers of socks. Having been a chubby adolescent — and having spent six summers at fat camp — I was terrified of gaining weight.
Unfortunately, nothing gave me as much pleasure as eating, which I did with abandon.
To maintain some semblance of control, I divided my eating into Food Days and Nonfood Days: that is, days when I consumed vast amounts, and days when I policed my caloric intake with military precision. The routine kept my weight in check, more or less. Never mind that it was insane.
No one at my college health center knew what to do with me. Clearly, I wasn’t anorexic; I was slightly round, in fact. I didn’t purge, so bulimia was out. To my distress, the counselors told me there was nothing they could do for me and sent me on my way.
Today, I would probably qualify for a diagnosis of “eating disorder not otherwise specified,” usually known by its acronym, Ednos. In the current edition of the Diagnostic and Statistical Manual of Mental Disorders, it encompasses virtually every type of eating problem that is not anorexia or bulimia.
Though its name is less familiar, it is diagnosed more often than those two disorders — in 4 percent of American women each year, according to the National Eating Disorders Association. (The association does not have statistics on men.) Subsets of Ednos include binge eating disorder, purging disorder, night eating syndrome, chewing and spitting out food, and even picky eating.
But the diagnosis baffles many clinicians, who call it ambiguous, vague and unwieldy. And so the American Psychiatric Association is overhauling its definition of Ednos for the next edition of the diagnostic manual, known as D.S.M.-5, to be published in 2013.
“The consensus is that Ednos is ‘too big,’ meaning it is being used more frequently than is desirable, as that label does not convey much specific information,” said Dr. B. Timothy Walsh, a professor of psychiatry at Columbia who is chairman of the eating disorders work group for the new manual.
Dr. Walsh said the panel was “considering a range of ways to reduce the frequency with which that very broad category is used.” For now, though, Ednos remains the nation’s the most common eating disorder. A September 2009 study in The International Journal of Eating Disorders found that Ednos was often a way station between an eating disorder and recovery or, less commonly, from recovery to a full-blown eating disorder.
While traveling with a scale in your backpack is not one of the criteria, preoccupation with weight and food is. So are severe chronic dieting, frequent overeating, night eating syndrome, purging disorder and possibly compulsive exercising. If that sounds a little vague — find me one woman who isn’t preoccupied with her body size — psychologists make a distinction.
“The eating has to be disordered in some way, as does the behavior relating to eating,” said Ruth H. Striegel-Moore, a professor of psychology at Montana State University. “Also, it has to lead to some kind of impairment. For instance, some women will not go to parties because they’re worried about eating.
“If you’re restricting yourself so much that it affects your work negatively, you would meet the criteria for Ednos.”
Even so, many clinicians say the diagnosis is just too roomy.
“One of the difficulties with Ednos is that there’s a lot of diversity within that category,” said Craig Johnson, director of the eating disorders program at Laureate Psychiatric Clinic and Hospital in Tulsa, Okla. “Because there are different presentations that not all clinicians are familiar with, there’s a risk that people who have disordered eating who could benefit from clinical attention won’t know that they have a problem.”
Indeed, one reason the panel wants to change the guidelines is to help patients with eating problems recognize them even if they do not exhibit any of the traditional symptoms.
Kris Shock, for example, used laxatives and restricted her food for years, but she never threw up or binged, and her weight was average. She did not seek psychiatric help for what she and her husband called her “eating problem” until age 31, when she became addicted to the diet pill ephedra, she said in a recent interview.
Now 37 and the director of a child care center in Atlanta, Ms. Shock said that when she finally got her diagnosis of Ednos, “it was like, ‘Ah, I am sick enough to get help and have the recovery experience.’ ”
Most health insurance policies do not cover Ednos. (Ms. Shock refinanced her home to pay for her week-and-a-half-long stay at a residential treatment center.) Yet people with it are at risk for many of the same medical problems that afflict anorexics or bulimics, including osteoporosis, heart attacks, hormone imbalance and even death. A study in the Oct. 15 issue of The American Journal of Psychiatry reported that the mortality rate associated with Ednos exceeded that for anorexia nervosa and bulimia.
With that in mind, many doctors blur the diagnostic lines just so their patients can get insurance coverage. A chewer and spitter might be classified as bulimic, Dr. Striegel-Moore said; an almost-anorexic would fall under binge eating disorder.
Clinicians say patients like these often need to feel they have a “real” eating disorder.
“A lot of patients feel this stigma if they know they’re diagnosed with Ednos: ‘Obviously, I’m not good enough to be anorexic,’ ” said Nicole Hawkins, director of clinical services at Center for Change, an eating disorder treatment center in Orem, Utah. “I’ve had many patients feel that they need to lose more weight so they lose their period so they can change the diagnosis. Patients really feel they have to get ‘better’ at their eating disorder to deserve treatment.”
That is how Stacey Taylor felt. Ms. Taylor, 26, a prekindergarten teacher in Alexandria, La., said she had been dieting since age 7; at 16, she lost 70 pounds, and from then until age 25 she purged and abused diet pills, diuretics and laxatives. Although she vomited 3 to 11 times a day, she was never classified as bulimic because she did not binge, and her weight was never low enough to be anorexic.
“The doctors would look at me and say, ‘You don’t look like you have an eating disorder — go home and get something to eat,’ ” she recalled, adding that she didn’t think she was “sick enough” to need help, either.
Some doctors say weight requirements should be eliminated for all eating disorders in the new diagnostic manual. Deb Burgard, an eating disorder specialist in Los Altos, Calif., notes that people of any weight and body mass index may binge, purge or diet excessively.
“I have worked with plenty of restricting average-sized and fat patients who really should be diagnosed with anorexia nervosa,” said Dr. Burgard, a founder of Health at Every Size, an approach that focuses on health rather than weight. “But there is confusion based on the current D.S.M. whether they meet the criteria for the diagnosis if they are not at a low B.M.I. — even if their current weight is extremely low for them individually and they’re showing signs of starvation.”
Perhaps the most difficult part of treating Ednos is that “normal” eating is such an elusive concept. Thinness tends to be the ideal, no matter what lengths people go to get there.
“What Ednos really demonstrates,” said Dr. Johnson, at Laureate in Tulsa, “is that we don’t have empirically derived diagnoses in psychiatry.
“Think about the diagnosis of depression. When does someone have a clinical syndrome versus a mood fluctuation? At what point should it be regarded as a condition that needs treatment? When you talk about food habits, it becomes extraordinarily complicated, because everybody has a relationship with food, and it’s usually a somewhat complicated one."
WASHINGTON — The Obama administration issued new rules on Friday that promise to improve insurance coverage of mental health care for more than 140 million people insured through their jobs.
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