They call it “ED.” As in Eating Disorder.
And for those suffering from anorexia, bulimia, bingeing or another eating disorder, ED is a real presence in their life, like an alter ego pushing them to use food to control what they see as chaos around them, creating shame for having the disorder and making them masters of deception to those around them.
“ED feels like a character in your life,” said Kara Ellsmore, 18, of Gorham, who was diagnosed for bingeing and purging during her freshman year of high school, and now is two years free from the behavior. “Each ‘ED’ is different for each person with an eating disorder.”
The disorders are both medical and psychiatric in nature, said Patrice Lockhart, M.D., director of the New England Eating Disorders, or NEED, program at Sweetser in Saco.
“Every person has a different constellation of symptoms,” she said. While other facilities in the state may offer some treatments, NEED is the only treatment program in Maine that sees the most severe cases, close to 500 per year.
Sweetser took over NEED from Mercy Hospital in Portland on Jan. 1 to focus the program more on the behavioral health aspects of the diseases. The 400-acre Saco campus is rural and in a working farm and home-inspired setting, with a team of therapists, nurses and dieticians directed by Lockhart working with patients.
Nationwide, 20 million women and 10 million men suffer from a clinically significant eating disorder at some time in their life, including anorexia nervosa, bulimia nervosa, binge eating disorder and others, according to the National Eating Disorders Association in New York. One in 200 American women suffer from anorexia, while another two to three in 100 suffer from bulimia. Some 10 percent college women suffer from a clinical eating disorder. Anorexia is the third most common chronic illness in adolescents. Only one in 10 people get treated.
In Maine, the Youth Risk Behavior Survey in 2005 found that even then, more than half of all students were trying to lose weight, six times as many girls believed they were overweight than actually were, and of all of those trying to lose weight, 11 percent fasted, 6 percent used diet pills and 5 percent vomited.
In Maine, there are no residential treatment centers that specialize in treating disorders, and NEED is the only intensive outpatient and partial hospitalization program, according to the Eating Disorders Association of Maine.
The program was a lifesaver for Ellsmore. Like many with eating disorders, her problem started in preteen years, as it did her mother, Joyce, who suffered from bingeing and purging from age 15 to her late 20s.
“It was a self-esteem issue. It was a way to lose weight and then became a way to control emotional issues,” said Joyce. “In the 1970s there wasn’t a clinical diagnosis, so it was very secretive. And that gave me empowerment. It’s not a disorder that’s easy to see.”
But she admits to feeling a lot of shame and guilt. “I was always chubby, but I was healthy,” she said. “I actually didn’t lose a lot of weight.”
After reading a lot about the addictive nature of eating disorders, she finally went to a counselor in Massachusetts and realized she had issues in her past that were at the root of the eating disorder. With therapy, she brought her eating disorder under control by age 29.
“I don’t know that you ever lick it,” Joyce said. “It’s always a threat that stays with you.”
Daughter Kara said she knew in passing that her mother had had an eating disorder, but she was fighting her own demons at age 12. An active volleyball and tennis player, Kara had a lot of changes in her life that year. The family moved from Maine to Massachusetts to take care of her grandfather, she was homeschooled and had to leave friends behind.
Initially she dieted, became a vegetarian and exercised intensely, more than two hours a day. Then she started bingeing and purging, and ultimately realized she couldn’t control herself.
“At first I told my mom I think I have something wrong, but I’m not sure,” she said. “I underplayed it and didn’t give her the whole story.”
They returned to Maine after a year, but Kara’s symptoms persisted. The seriousness of the situation became clear when at age 15, she was admitted to the NEED program at Mercy.
“I believed until the last minute I didn’t have a problem, until I couldn’t deny it anymore,” she said. Now 18, she’s been in recovery for two years, despite a short relapse during her treatment.
Said mother Joyce, “I should have seen this in hindsight, the dieting, the running and the isolation. I was in denial, too.”
A COMPLEX PSYCHOLOGY
The National Institute of Mental Health reports that eating disorders are caused by a complex interaction of genetic, biological, behavioral, psychological and social factors. The condition received national attention in the 1983 when Grammy-winner Karen Carpenter died at age 32 of heart failure related to years of struggling with anorexia. She had been called chubby as a teenager, and dieted from 145 to 120 pounds, then later dropped to a skeletal 90 pounds in the mid-1970s, her health in jeopardy. More recently, Disney star Demi Lovato spoke out about her struggles with bulimia, bipolar disorder and substance addiction that made her think she would die.
Lockhart first encountered ED during her psychiatry residency at Maine Medical Center when she met a 19-year-old patient who was bulimic and suicidal.
“She trained me,” Lockhart said.
She added that there still is a bias around weight, with thinness the ideal. A lot of the problem, though, is about women not loving themselves.
Lockhart’s former patient Ellie Lavoie, who is now finishing nursing school, shared a blog she wrote for the National Eating Disorders Association with Lockhart. It reflects the internal struggle of a young woman crippled by a low self-esteem as she struggles to meet an unrealistic, idealized body image.
“For the first time in almost five years, I can finally start to say that I am proud to be who I am. I’ve realized that I’m this way because I made the decision to let go of a friend. A friend who made me feel comfortable and not alone, but one who criticized all of my choices. One who told me I was never good enough and that I needed to become better. This friend isolated me from all social activities with friends and made me scared to do anything outside my normal routine. Eventually, this was the only friend I felt I had. This friend was my eating disorder.”
A typical NEED treatment regimen runs five days a week, with five to 15 patients treated in a day using group and individual therapy sessions and diet plans. They get two meals and two snacks, then go home in the evenings and regroup on Monday with their families to talk about their experience. The initial program runs at least three weeks, because that’s how long it takes to change a pattern, Lockhart said.
Patients are weighed regularly, but they have to step onto the scale backwards so they can’t see their weight — a tactic to help them overcome their obsession with weight and body image.
Lockhart said she could not estimate the cost to society of treating eating disorders. As for patient costs, insurance often covers most treatments with Sweetser, with charges ranging from $100 for an assessment to $900 for a full day treatment program.
For more information on Sweetser’s eating disorders program, call The Promise Line at 1-800-434-3000.
Correction: This story was updated at 8:08 a.m. on March 19 to correct an incomplete phone number for The Promise Line.