One woman's battle with anorexia

Monday, January 22, 2007

Jessica Mitchell-Smith, 34, of Burlington describes anorexia as a voice in her head telling her she needs to lose just a little more weight. When she entered an in-patient clinic in Massachussetts earlier this month, she weighed less than 87 pounds.

Jessica Mitchell-Smith looked at the grilled cheese sandwich on the plate in front of her and began to sob.

"It looked so greasy and cheesy to me," she explained. "I just couldn't eat it."

That was her anorexic voice speaking, the one that has been talking her out of eating regularly for a good part of the past 20 years.

It is also the voice that has driven her to where she is today: a 34-year-old woman and mother of two engaged in the fight of her life at Walden Behavior Care in Waltham, Mass., an in-patient center for people with extreme eating disorders.

Mitchell-Smith's predicament is serious. The day she arrived in Waltham, she weighed 87 pounds, wore size 00 pants and had trouble walking across a room without holding on to someone's arm or a table or chair.

She said she is determined to let the other voice inside guide her, the one that wants to get back home to Burlington, be with her children and become a social worker helping others conquer anorexia.

She also hopes that, by talking publicly about her problem, it will reflect back on her when the road to recovery seems overwhelming and she becomes discouraged.

"I wake up in the morning and I don't want to do this anymore, I don't want to eat," she said in a soft, gentle voice. "But then I talk myself into eating. I tell myself I want to live life, not just simply exist, that I miss my children and want to get home to them."

That might not happen for a while. If all goes well, Mitchell-Smith will be at the Massachusetts facility for two to three months undergoing an intensive, sometimes treacherous, program to gradually restore weight to her body and drive the appeal of anorexia from her mind.

If she succeeds, it will be a victory, too, for Vermont's year-old "global commitment" Medicaid waiver program, which caps Medicaid funding in Vermont but gives the state more flexibility in how to spend the money.

This month, the program invoked its newfound ability to bend standard coverage rules and agreed to pay for her care -- all of it. The decision was aided by the fact there are no facilities like the Walden center in Vermont.

"We'd have been hard-pressed to have done this under the old rules," said Joshua Slen, director of Vermont Health Access, which approved the program for Mitchell-Smith at the urgent behest of her Fletcher Allen Health Care doctor and case worker.

One day last week at Walden, the struggle for Mitchell-Smith came down to a war of wills over what to do about that grilled cheese sandwich.

Her sobbing was so disruptive to other eating disorder patients, she said, that she was asked to take her food and go out in the hallway. Eventually, she ate the sandwich and the crisis subsided.

"I don't have a choice," she said.

Adulthood anorexia

Anorexia is one of the least understood mental illnesses, according to local and national eating disorder experts.

It attracts minimal research funding. Health insurers are reluctant to pay for the sort of treatment Mitchell-Smith is receiving. Among eating disorders, anorexia is less common than the binge-and-purge disorder of bulimia, but is more lethal. One person in 200 suffers from anorexia; 20 percent will die prematurely because of complications from the illness.

Once thought to be health problems that teenage girls outgrew when they entered adulthood, cases of anorexia and bulimia are increasingly turning up among middle-aged women.

"One of the biggest eating disorder centers in the country recently reported for the first time that adult women comprised more than one-third of its admissions," said Dr. Margo Maine of West Hartford, Conn., a national expert on eating disorders and author of the book "The Body Myth."

That's also reflected in the number of adult women seeking help at Vermont's two major out-patient eating disorder clinics, The Burlington Eating Disorders Center and Adams Center for Mind and Body in South Burlington.

"More cases are coming forward," said Suzanne Adams, director of the Adams clinic. Jyoti Daniere, director of the Burlington Eating Disorders Center, agreed. "There seems to have been a recent surge in older women," she said, but the trend is based on anecdotal evidence, not academic research.

Mitchell-Smith said four other middle-aged women were hospitalized with eating disorders at Fletcher Allen Health Care when she was there this month.

Many factors can lead a woman to become bulimic or anorexic, but eating disorder clinicians agree that the media's promotion of women with ever-thinner "perfect bodies" is the most damaging influence of all -- for women of all ages.

"The pressure as a woman ages is not to look like your age," Daniere said. "Dieting is seen as a simple solution to the complex problems women face as they're raising children, having a career and not getting paid as well as men."

Mitchell-Smith, who grew up in the Burlington area, said her eating struggles began when she was 13 and living in a family with a father who she said was "always concerned that we look OK" and a mother who was "always dieting."

Her parents have divorced, and she no longer is in contact with her father. Her mother, whom Mitchell-Smith described as "very supportive" of the quest to conquer her anorexia, did not respond to requests to be interviewed for this story.

During her 20s, Mitchell-Smith married and gave birth to two children; she was later divorced. She worked in sales, attended community college and became a dental hygienist. She is also an artist.

"She is strong-willed and good-hearted," said Rory Malone, 43, her boyfriend and biggest advocate for getting her to confront her anorexia.

"She will do anything for anybody," he said. "She can make anything beautiful. She is like a delicate flower. Sometimes the petals fall off, but the stem never breaks."

When her unhappy marriage ended, Mitchell-Smith and her two children were homeless for a while. Her depression, coupled with her anorexia, was sometimes so powerful that there were mornings she could not get out of bed. She lives on Social Security disability payments.

"When I was pregnant with my son, there were times I couldn't eat," she said. "I did not gain the weight I was supposed to, and my son was small when he was born. I was so tremendously guilty about that. It was the first time I realized I had a serious problem."

Four times in 15 months, Mitchell-Smith became so weak that she was admitted to Fletcher Allen Health Care in Burlington. The first three times, she left after deciding she was better and could beat her eating disorder by herself. When she was admitted to Fletcher Allen for the fourth time, this month, she knew she had to get help or die.

"The last night in the hospital before she went to Waltham, when I was holding her in my arms, she was so fragile it was like she was a little baby," Malone said. "She was so weak."

Medicaid miracle

Dr. Judith Lewis knew as soon as she saw Mitchell-Smith after her most recent admission to Fletcher Allen that something dramatic had to be done.

"She was failing at out-patient care," said Lewis, a psychiatrist. "She was not able to keep a reasonable weight; she was eating less than 500 calories a day, and her prognosis was not improving."

Lewis and a hospital caseworker began pressuring the Vermont Health Care Access Office, which is responsible for administering all publicly funded health care in the state, to pay for long-term, in-patient and residential treatment for Mitchell-Smith.

Obtaining approval would be difficult, however. The state has no true in-patient program, which meant that Vermont Health Access would have to pay an out-of-state facility for the service. Plus, state rules required that the facility be connected to a conventional hospital.

"It seemed like a red-tape issue to us," Lewis said.

If Vermont hadn't agreed to the so-called "global commitment" arrangement with the federal government in late 2005, the red tape might have been enough to scuttle the treatment Mitchell-Smith needed.

Under the first-in-the-nation deal, the state agreed to accept caps to federal Medicaid funding over the next five years as a way to reduce the state's Medicaid debt. In return, the deal gave the state flexibility on how to manage the health insurance program.

"We are now capable of paying for treatment if it is shown to be the most cost-effective option for an individual with a specialized, chronic condition," Slen said. He said the state has made similar exceptions in nine or 10 other cases in the past year, but this was the first involving a patient with an eating disorder.

"It's the right clinical decision and also the least costly decision," Slen said. "Using an ICU is the most expensive way to treat someone." ICU is an acronym for a hospital's intensive care unit.

Adams and Daniere praised the state for using Medicaid money in such a creative way. Both said people in Mitchell-Smith's situation need such extended care to overcome the tendency to return to bad habits and that most health insurers have trouble committing to such a long-term plan.

So do the patients. Malone said late last week that Mitchell-Smith has begun talking about forgoing the long residential phase of her care and returning home this month.

"I don't know how to convince her to stay," he said. "She's smart and she knows what needs to be done ... but this is a lot stronger than either of us."

Time to go

Right up to the morning of Jan. 12, when she and Malone were packing her things at Fletcher Allen for the trip to the Waltham center, the two voices inside Mitchell-Smith's mind continued to argue over whether what she was about to do was necessary.

"I know I am damaging my body," she said, "but until now I haven't had enough strength to override that voice in my head telling me, 'Just five pounds more,' and that, 'You'll get fat if you eat.'"

Mitchell-Smith debated which outfit to wear, wondering if one of them would make her look too fat. She announced she wasn't going to take a Diet Pepsi on the trip, but then wondered whether she would be able to eat in front of people or bring herself to eat any kind of pasta.

"I'm just going to get fat," she told Malone, strands of her long black hair hanging about her gaunt face.

"No, you're just going to get comfy," he replied.

Even as a hospital patient, she'd done battle with herself over what -- if anything -- to eat. Asked when she last ate, Mitchell-Smith said it had been three days since she had consumed part of a bagel and three cucumber slices.

Since then, she'd just drunk fluids and managed to make it look like she had eaten when she hadn't by cutting up the food on her hospital tray into tiny pieces and spreading it around her plate.

Or, she just hid the food that had been served to her.

"Oops! Look at this," she said, laughing shyly as she withdrew a bagel wrapped in a napkin that she had hidden on a shelf behind her clothes. "I forgot I even did that."

The two chuckled about some of the ways they've fought her anorexia together. Malone said he once took the bathroom scale and threw it into the back yard. Another time, on the advice of her therapist, he hid the key to her treadmill.

"I've read stories about anorexics dying on a treadmill," she said. "I was running on it between 1 1/2 to two hours a day. I'd burn off every calorie I'd consumed, and then I'd keep going."

A photo of her with her two children slipped out of a book. Malone picked it up and handed it to her.

"They're a huge, driving force for me to get better," she said. "They're sad. They know it's going to be hard for me but they told me, 'We want our mommy back.' I told them I might be gone for a few months."

Tears began to fill her eyes. Malone put his arms around her.

"That's better than being gone forever," he murmured.