Patients share struggle with eating disorders

Most people go to the hospital because they want to receive treatment, but that is often not the case for patients with eating disorders.

Treatment can be a fearful concept for those who suffer from eating disorders such as anorexia and bulimia.

“I’ve been in treatment for six months,” said one woman diagnosed with an eating disorder who did not want to be identified. “Somewhere deep down I knew that I needed help.”

The woman said she has struggled with anorexia for 15 years and has experienced about 20 hospitalizations due to the illness.

“I’m a lot more hopeful now than I was when I came in (for treatment),” she said.

Eating disorders affect chemicals in the brain, making disordered behavior, such as purging or abstaining from food, soothing.

“It’s a coping mechanism. It’s about control,” said Catherine Mapes, LCSW, lead therapist in the VITA Eating Disorders Program at Research Medical Center.

Treatment means the patient will lose this coping mechanism and in most cases gain weight.

“A lot of studies show our patients walk in the door not really wanting a positive outcome for treatment,” said Deborah Haber, RN, MSN, Research Medical Center nurse.

Haber serves as the director and educator of the eating disorders unit.

Patients in the unit range in age from 14 to 65. The majority are diagnosed with anorexia or bulimia nervosa.

“Their purging may be excessive exercising or diuretics,” Haber said.

Some patients have a combination of both disorders and are classified as eating disorder non-specified.

Sometimes the disorder starts out slowly, and even seems positive.

“We have patients that start out vegetarian and then it just gets more selective from there,” Mapes said.

These patients do not supplement their diets with non-dairy calcium and non-meat protein. Instead they eliminate these items from their diet all together.

During the first stages of an eating disorder an individual can seem more focused, disciplined and competitive.

“These behaviors make you more competitive, and that’s fine until you can’t compete,” Haber said. “It also (runs) in families so you may have a mom or sister pushing the behavior.”

VITA Medical Director Konoy Mandal, MD, said an eating disorder provides positive reinforcement in its early stages.

“When people start practicing their eating disorder they feel phenomenal,” Mandal said. “The behaviors are self treatment for the pathology of the brain.”

Those who suffer from eating disorders often resist treatment, and family and friends have to intervene.

“My family and friends became really concerned about me,” said one man who suffers from an eating disorder. “My life had gotten really isolating.”

This individual said he has made progress through inpatient treatment.

Patients in VITA’s inpatient program typically stay three to four weeks and then participate in an outpatient program in the unit.

“Our main purpose is as an intervention,” Mapes said.

But an inpatient intervention does not come cheap.

Mandal said inpatient facilities can charge as much as $30,000 a month. Insurance companies do not always pay for the full length of stay.

“It’s a very expensive condition,” Mandal said. “Cost is a reality.”

On average, VITA patients pay $1,500 out of pocket for their treatment. Mandal described the center’s low price tag as the exception rather than the rule.

“We are few and far between,” he said.

And even at a reduced price the cost can be a struggle for many families.

“It’s amazing what a burden three grand or $1,500 can be,” Mandal said.

There are currently two bills in Missouri that would require insurance companies to pay for eating disorder treatment. These bills, House Bill 1733 and Senate Bill 744, would mandate that eating disorders are given the same level of coverage as medical conditions.

The bills would also establish the Missouri Eating Disorder Council to administer eating disorder education and awareness programs.

About 250,000 Missourians suffer from eating disorders. Many of these individuals require inpatient treatment for recovery, Haber said.

“For some of our patients there is no partial option,” she said.

The health costs associated with eating disorders extend beyond the cost of inpatient and outpatient care. The disorders damage the heart, liver, kidney, bones and brain.

Treatment coverage at the onset of the disorder provides a cost savings to insurance companies, patients and society, Mandal said.

“It would be a no-brainer,” he said.

Eating disorders affect people from all stages of society. Even nurses are not immune.

“We do get people with medical backgrounds in here,” Mapes said.

Haber said nurses struggle with treatment because, as health care professionals, they feel like they should know how to handle the situation.

“We’re nurses and we know what we’re doing,” Haber said. “The expectation is we make no mistakes.”

People with eating disorders can be high achievers, a characteristic shared by many nurses.

“They tend to be very perfectionist,” Haber said. “Sometimes eating is the only thing they can control. They feel like everything else is controlled on the outside.”

Nurses come in contact with people who have eating disorders in a variety of settings, whether it’s a patient in a physician’s office, a co-worker on the floor or a family member at home.

Those who suffer from these disorders urge nurses to be gentle when they approach someone who might have an eating disorder.

“Be compassionate. Realize it’s not a choice,” said one woman who suffers from an eating disorder.

Those recovering from eating disorders also encourage nurses to use sensitivity when dealing with someone who appears excessively thin or might have an eating disorder.

Comments that imply jealousy of a patient’s thin body can come across as insensitive to a person undergoing treatment. And eating disorders are not confined to the underweight. People who are overweight also suffer from disorders such as anorexia and bulimia.

Staff members at VITA said health care workers need to debunk the misconceptions about eating disorders.

“The eating disorder is not about losing weight,” Mandal said.

These disorders may start out about food and dieting but a deeper issue exists at the core of the disorder, he said.

While people who have eating disorders may think they have the situation under control, Mandal said nurses should not ignore the signs they see in a patient, colleague or family member.

“This is not OK. The person fundamentally is miserable no matter what they say,” Mandal said.

The individuals with eating disorders who talked to the Nursing News agree that the issue should not be ignored. These people said compassion is key when it comes to intervention.

“We’re so starved for love and attention anyway,” one person said.

An empathetic approach can help pave the way for treatment for those who may not feel ready to take that step.

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