Dr. Suzanne Dooley-Hash believes that she will never fully recover from the anorexia that has plagued her since she was 15 years old.
For many years, she did not take laxatives constantly to lose weight, as she did in the mid-1980s, and her health was “relatively O.K.” Thoughts about her weight did not occupy every second of every minute of every day.
But in 2005 she relapsed, losing one-third of her body weight in six months. She took off 19 months from her job as an emergency room physician at the University of Michigan Medical School in Ann Arbor to devote herself to getting her life back in order.
Like many patients with eating disorders, however, she is not sure what recovery means.
“Does it mean ‘functional?’ ” asked Dr. Dooley-Hash, 45. “I’m a physician at a really high-powered institution, and I’ve published in well-respected journals — I’m functional. I don’t think functionality is necessarily a good measure.”
Dr. Dooley-Hash is not alone in her confusion. Most medical experts agree that a third of people with the disorder will remain chronically ill, a third will die of their disorder, and a third will recover — with one significant caveat. There is surprisingly little agreement as to what “recovery” means for people with anorexia.
Indeed, just a handful of studies on long-term recovery rates have been conducted over the last decade or so, and different parameters were used in each one.
“Without consistency, it’s hard to compare across studies,” said Dr. Michael Strober, a professor of eating disorders and psychiatry at the University of California, Los Angeles. “You just have to know how recovery is defined in each study to have a balanced interpretation.”
It is difficult to define recovery from an illness that has both physical and mental dimensions.
If, for example, a patient reaches “normal weight” — which researchers define as either 85 or 95 percent of a person’s ideal weight — and starts menstruating again, she would be considered to have recovered in most studies.
But what if she still weighs herself daily, monitors her calories with a vengeance and obsesses about food and the size of her ankles? Or, as is often the case, moves from anorexia to bulimia or binge-eating disorder?
“About 50 percent of people with anorexia will be able to reach and maintain a normal weight, but most of them are very preoccupied with the calorie content of food,” said Dr. Katharine Halmi, professor of psychiatry at Weill Cornell Medical College in New York City.
Still, she added: “Many people who’ve never had anorexia watch their diet carefully. So the big issue is, how do you define recovery? Maintaining a normal weight, recurrence of menstruation is easy to document. Mental status is a different problem.”
With that in mind, many with anorexia prefer to view recovery as many alcoholics do — the disease may be in remission, but the potential for relapse always lurks in the background.
“Some people find comfort in saying ‘recovering’ so they don’t have to be responsible for being recovered, which means ‘I will never relapse,’ ” said Aimee Liu, 57, author of “Restoring Our Bodies, Reclaiming Our Lives.” Others, she said, liken their eating disorder to managing a chronic illness like diabetes, requiring constant vigilance.
“I say to patients, ‘This is your Achilles’ heel,’ ” said Dr. Daniel Le Grange, an associate professor of psychiatry at the University of Chicago and director of the eating disorders program at the University of Chicago Medical Center. “If you have another crisis, you’re predisposed to resorting to starvation as your way of managing that issue. It would be foolish of us as clinicians not to prepare our patients that they should be on the lookout for a recurrence.”
Most doctors believe recovery from anorexia is rarely absolute and more often occurs by degrees. While patients may get better, aspects of their disease will continue to nag at them.
“The literature suggests you can have physical recovery from the weight loss, but the cognitive symptoms might not continue to get better,” said Dr. Kamryn T. Eddy, a psychologist at Massachusetts General Hospital. “They definitely do improve, but one of the things we wonder is, how well does one have to be to be ‘recovered’? And how well does one actually get?”
In the absence of expert consensus, patients and caregivers have come up with their own definitions of recovery.
Harriet Brown, author of the recently released “Brave Girl Eating,” a memoir of her 14-year-old daughter’s bout with anorexia, defines it as “absolutely ordinary relations with food.”
And what exactly is ordinary? “That thinking about food does not consume large quantities of your time and energy,” she said in an interview. “You enjoy food, you don’t undereat or overeat often, you don’t meet any of the diagnostic criteria for anorexia. Your weight is in a healthy range for you. And most of all, you’re able to live life in a way that’s not completely organized around food and eating.”
For Ms. Liu, recovery is a “full restoration of nutritional, physical, emotional and psychological health.” But in a telephone conversation, Ms. Liu, who was actively anorexic from age 13 to 20, acknowledged that without good treatment many people spend years in what she called the “half life” of anorexia.
“They recover nutritionally and suspend the behaviors of starving, bingeing and purging,” said Ms. Liu, who suffered a relapse 11 years ago. “But the self-criticism, self-abuse, perfectionism, judgmentalism and restrictive mind-set persist.”
Still, both doctors and patients emphasize the importance of believing that full recovery is an option.
Kathleen MacDonald, a policy assistant at the Eating Disorders Coalition in Washington, was anorexic and then bulimic for 16 years, but considers herself fully recovered since 2004.
“People always said once you have an eating disorder, you’re always going to have an eating disorder,” she said. “I tell people, ‘There was a time in your life when you didn’t have an eating disorder, and if that’s possible, anything is.’ ”
For Dr. Dooley-Hash, the future feels a little murkier.
“I feel like I can’t ever be off guard,” she said. “The next time I’m overwhelmed and stressed, my first instinct is going to go back to restricting. I think I would be naïve to think it would ever not be a part of my life.”