Health

People with eating disorders are often misunderstood - and silent

About 20 million women and 10 men are afflicted with some form of eating disorder

Photo illustration by Cliff Jette/The Gazette
Photo illustration by Cliff Jette/The Gazette

Millions suffer silently from a disease that often is misunderstood and even more often made into a punchline.

An estimated 20 million women and 10 million men nationwide will suffer from an eating disorder — including anorexia nervosa, bulimia nervosa and binge eating disorder — some time in their lives, according to the National Eating Disorder Association.

That’s higher than the number of American adults diagnosed with heart disease — 26.6 million — the Centers for Disease Control and Prevention reported last year.

And with them can come severe health problems — tooth decay, slow heart rate and low blood pressure from electrolyte imbalances, dehydration that can lead to kidney failure, and muscle loss.

What’s more, anorexia has the highest mortality rate of any mental illness, with 4 percent of anorexic individuals dying from complications of the disease.

The mental illness is isolating, experts said, and those struggling with them often keep it a secret or are hesitant to ask for help due to the shame and social stigma associated with starving oneself or making oneself throw up.

People label those with eating disorders as vain, selfish and out-of-control, said Richelle Derfus, a Cedar Rapids-based therapist who works with individuals with eating disorders.

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“With other mental illnesses, people don’t see the behavior associated with it,” she said. “People can’t wrap their heads around (eating disorders). They think, ‘why don’t you just eat?’ or ‘just don’t throw up.’”

But eating disorders are far more than a quick way to lose weight. They’re coping mechanisms, security blankets and ways to deal with stress, life’s pressures and problems, or past traumas.

And they’re complicated to treat.

That’s because unlike overcoming an alcohol or drug addiction — in which the individual can cut out the substance — someone recovering from an eating disorder can’t eliminate food.

“I help them become competent eaters,” said Sue Clarahan, a registered dietitian who specializes in eating disorders. “Their bodies have become such an enemy, they need to learn to trust themselves.”

That can be a process, she said, because eating disorders are inherently negative. A person dealing with such a disorder doesn’t believe he or she should be taken care of, she added.

“You say awful things to yourself. Things you would never say to another person,” Clarahan said.

Clarahan regularly tells her clients that practice makes permanent, and the man or woman recovering from an eating disorder has to relearn what fullness feels like and how to respond to hunger cues — things he or she has taught the body to ignore.

“It’s a tremendous amount of work recovering from this disorder,” she said. “You have to have self-compassion and self-grace.”

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Clarahan said she works through how foods can help the body and the systems that have trouble when not adequately fueled — from maintaining a normal body temperature to harming the reproductive system.

“For instance, your reproductive cycle can dive bomb. You need estrogen to form strong bones,” she said. “I have a client that is 25 years old and has full-blown osteoporosis. Things multitask in the body.”

But recovering from an eating disorder is more than just reaching a “healthy” body weight or correcting eating habits.

It’s working through emotional issues, including past traumas such as sexual abuse or domestic violence, and learning healthy ways to manage stress, said Derfus.

“A lot of people don’t have coping skills,” she said. “And they think ‘if this works, why change it?’”

Disorder as identity

Relapse is real threat, experts said, because old patterns are easy to fall back into when something goes wrong, to deal with a stressful day, a divorce or a sick parent.

The eating disorder becomes their identity, Derfus said, and the person with anorexia or bulimia doesn’t want to give up that part of themselves.

Julie — not her real name — has battled anorexia her entire adult life. She was diagnosed in 1998 but said that she struggled with it for years before her diagnosis.

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Julie has asked not to be identified by her real name due to the stigma association with eating disorders.

“I wouldn’t allow myself to get above 100 pounds,” she said.

When Julie became pregnant, her focus moved from maintaining her weight and onto being “the perfect” mother, she said. And so her weight climbed, and before she knew it she reached 140 pounds — the most she had ever weighed.

“What really set me off,” she recalled, “was one day when I was at a function with a lot of people who I knew. Someone came up to me and asked when the baby was due.”

This was several years after Julie had given birth and she was not expecting.

For the rest of the party, Julie couldn’t focus on anything other than that comment. She was determined to lose weight. So she lost 20 pounds.

“It was a huge victory for me,” she said. “So many people complimented me. But that fueled the fire.”

She kept losing weight. She couldn’t stop. She weighed 88 pounds.

Losing weight “consumed my whole life. I became its prisoner,” she said.

Julie’s husband became concerned and had her see their family doctor. But he didn’t understand what was wrong with her.

She eventually was admitted into the hospital, where she had feeding tubes inserted into her stomach. But the only thing Julie could think about was losing whatever weight she gained during that hospital stay.

“I wanted free of it,” she said. “But I couldn’t do it.”

She became depressed, and even had suicidal thoughts. It wasn’t until she began seeing Cathy Keys-Andrys, an advanced practice nurse and counselor at UnityPoint-Health St. Luke’s Hospital in Cedar Rapids, that she began to work through her problems.

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Keys-Andrys works with a team, including a dietitian and family therapist. The team does an initial assessment, she explained, and then puts together recommendations for treatment.

“A lot of people think it’s all about food, but it’s not,” Julie said. “It’s something emotional, things from your past, abuse — verbal or physical — low self-esteem. You need to work through them — to know you’re worthy of love.”

Julie doesn’t believe you can ever fully recover from an eating disorder. But she does have hers under control. She sees Keys-Andrys every month. It’s important, she said, to have a team in place to help.

But she knows how difficult it can be for someone to admit that they have a problem and it can be even harder to ask for help.

“There is hope,” she said. “You need to find someone who can help because you can’t do it alone.”

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