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The Starving Brain by Wenda Reed

Why not me? Why not Susan? Why Jeannie?

We all grew up with cultural messages suggesting thinness equals beauty and dieting is good for you. As a skinny eighth grader, I joined my friends in throwing away the school lunch every day and eating an 8-oz. container of yogurt instead.When she was a freshman, my friend Susan joined her college sorority sisters in eating meals and then going en-masse to the bathroom to throw them up. Neither of us emerged with an eating disorder.

Jeannie was a high school classmate of mine with a pretty face, an average build and a sweet personality. Seeing her on the bus the summer after my first year in college, I recognized only her sunken face. Her body was skeletal, emaciated; I’d never seen anything like it except in photos of Holocaust victims or Biafra refugees. I couldn’t help blurting out, “What happened?”

“I’ve been sick,” she said quietly. Later I found out she had anorexia.

Anorexia nervosa is a mental illness characterized by intense fear of gaining weight or being fat, severe restriction of calories often leading to refusal to eat, extreme weight loss and distorted body image. It is most commonly diagnosed in adolescence, but can arise at any life stage.

About 10 million females and 1 million males in the United States currently battle anorexia, according to the Seattle-based National Eating Disorders Association (NEDA) and Harvard Medical School, and between 5 and 20 percent of people who suffer from anorexia will die from it, most commonly from heart failure or suicide. This represents the highest mortality rate of all psychiatric disorders.

At present, depending on who you ask, recovery rates range from 25 to 70 percent.

Fortunately, over the past 10 years the understanding of the causes of anorexia and other eating disorders has undergone a sea change, and this is leading to improved forms of treatments and hopefully better odds for recovery.

DEBUNKING MYTHS

“Some of our early ideas are flat-out wrong,” says Dr. Thomas Insel, director of the National Institute of Mental Health.

“We had a sense that this [anorexia and bulimia] was a set of illnesses that were largely due to the way that a young girl was growing up, her relationship with her parents, difficulties about becoming independent and lots of concern about self-esteem.” While these can be factors, “we now understand eating disorders as fundamentally brain disorders.”

“Our understanding has broadened to biological, psychological and social causes,” says Jillian Lampert, PhD, outreach and research director for The Emily Program treatment centers in Minnesota and Seattle and a recovered anorexic. “There’s never just one thing that causes it.”

“We are now convinced that eating disorders are biologically based diseases, and so we don’t blame parents anymore,” says Lynn Grefe, chief executive officer of NEDA.

Nor is the blame directly placed on the individual’s free will. “We’re not pointing at this thin person and saying, ‘Eat something,’ Grefe adds. “We now know that the brain is working differently; people don’t go out and choose to have anorexia.”

While NEDA and other groups bemoan the constant media attention on thinness and the promotion of dieting and its effect on negative body image, most experts no longer blame society for anorexia. “Not everyone who is exposed to the same societal messages gets an eating disorder,” Lampert says.

“It’s not even about how you look,” says 19-year-old Monica, who was treated for anorexia three years ago. “It’s about how you feel. It’s like an addiction, so the media message is not the most important thing.”

Media ideals also weren’t important to 27-year-old Erin, who has been in active treatment for anorexia since 2006 and couldn’t believe it when she was first diagnosed at age 15. “I thought everyone was joking. I thought anorexics were thin, and I wasn’t thin. I thought they were image-obsessed Barbies and girlie-girls, and I was a tomboy. I wanted to explain that it wasn’t that I don’t want to eat. I can’t eat.”

GENETIC LINKS

Research is beginning to shed light on why some of us — like Jeannie and Monica and Erin — become anorexics, while most of us do not.

Cynthia Bulik, PhD, at the University of North Carolina, is a leading researcher in genetics and eating disorders. In studies of twins around the world — mainly of European ancestry — she found that there is a 31 to 56 percent “heritability factor,” or percentage of genetic liability that is ascribed to the disease. In other words, if you come from a family where someone has an eating disorder, you are more likely to have one too.

In 2010, scientists at the Children’s Hospital in Philadelphia studied the genomes of 1,003 anorexia patients and 3,735 people without the disease. They found that people with anorexia have distortions in genes that influence how neurons communicate with each other in the brain. There are deletions or duplications of DNA sequences on Chromosome 13 and other places that occur only in anorexia cases.

“There does seem to be a genetic factor at work,” Insel says. However, there is no one single gene that causes anorexia, as there is for sickle-cell anemia or Huntington’s disease. “The genetics don’t cause the disease; they set you up for the risk,” he says.

“There are genetic traits that people have that make them more vulnerable to societal influences,” adds Grefe. “I’ve heard people say, ‘You’re born with the gun — the genes that put you at risk — and life pulls the trigger.”

AN “ANOREXIC PERSONALITY”

Genes provide a cluster of behavioral traits, evident in early childhood, that are now associated with the development of anorexia in some people. Lists compiled by a dozen researchers and clinicians are remarkably similar and include anxiety, perfectionism, shyness, obsessive-compulsive tendencies and a warped sense of long-term consequences. (See sidebar for a more complete list.)

“In a child, these personality and temperament traits were usually in the mild to normal range,” says Dr. Walter Kaye, director of the Eating Disorders Treatment and Research Program at the University of California, San Diego, and one of the world’s leading researchers on brain imaging and eating disorders. “They were compliant, eager-to-please children who did well at school.”

In a recent article in Psychiatric Times he explains that “not everyone who develops anorexia has all these traits in childhood, but most have one or more of them.”

Many feel that parents should be better educated about the association of certain personality types and anorexia.

Usually life “pulls the trigger” when a major biological or life event occurs: puberty, changing schools, going to college, divorce or a desire to get thin after childbirth.

Monica’s experience illustrates the fact that no one thing causes anorexia and that life changes can lead to its onset.

“I had a lot of OC/DC (obsessive-compulsive disorder complex) growing up,” she says. “I was perfectionist and anxious; I had lots of panic attacks. I was a stickler for good grades in school, and busy all the time with dance and sports.”

But it wasn’t until she entered 9th grade and later attended an out-of-state art camp during her sophomore year of high school that she developed anorexia and experienced drastic weight loss.

Carol, the mother of a girl who developed anorexia, says looking back she can see that her daughter Rachel, now almost 14, was an anxious, perfectionist child with obsessive-compulsive tendencies.

“We never talked about dieting in our family; there were never fashion magazines around,” she says. But suddenly, when Rachel turned 11 and was preparing to go to middle school, she told her mother she was “not feeling good.” Carol could see that she was depressed.

“She told me she thought that if she lost a few pounds, she would feel better,” she remembers. “She stopped eating with a vengeance.”

THE BRAIN OF AN ANOREXIC

Only in the last five years have scientists like Kaye had the brain-imaging tools to peek into the neurobiology of the disease.

In one study, he and his staff fed small amounts of sugar to people who had recovered from anorexia but who still had the same underlying temperaments and anxieties. When a healthy person eats sugar, the brain first consciously registers, ‘I have eaten something sweet’ and then the part of the brain which Kaye refers to as the “taste cortex” usually registers a “sensory/hedonic response” indicating that the sensation is pleasurable. Kaye found that the pleasure response seemed to be “blunted” in people who had suffered from anorexia.

He also observed another glitch that seems to occur in homeostatic responses, or ways the body regulates itself to ensure stability. (An example of a homeostatic response is when your brain kicks in to force you to take a breath if you’ve tried to hold your breath for too long.)

When most people get hungry, the brain sends the message, 'you have to eat.' That message seems not to get through to people with anorexia.

“Most people get irritable and uncomfortable when they’re hungry and feel better when they eat. Because of some kind of wiring problem, people with anorexia feel better and less anxious when they don’t eat,” Kaye summarizes.

One explanation for this could be that they have altered serotonin and dopamine metabolism. Brain imaging also indicates an imbalance between the circuits that regulate reward and emotion and those associated with consequences and planning ahead.

Once the person becomes anorexic, the brain changes become even more pronounced because a starving brain operates differently than a normal brain. The starving brain loses volume and, in some ways, regresses to prepubertal function.

Dr. Mary Ellen Trunko, medical director of the UC San Diego Eating Disorders Treatment and Research Program, works with her clinicians to translate the research of Dr. Kaye and others into treatment.

“Some of what occurs [in an anorexic’s brain] has a metabolic basis,” she explains. “Any human or animal that’s starved obsesses over food, stretches out the eating of the food, thinks about it all the time. Once the illness takes hold, it distorts thinking. The physiological and metabolic changes compound the original mental illness. Brain scans will show some kind of fear and stress response to food.”

The result is a body image distortion. “They see something totally different [from reality] because they’re thinking totally differently,” Lampert explains. “They describe that most of the time they see images of themselves as fat, but if they see themselves unexpectedly — in a store window, for example — they’ll realize for an instant why everyone’s so worried about their low weight. But then their inner messages to themselves will kick back in.”

“The physical symptoms I felt when I wasn’t eating became a way of life,” Erin remembers. She doesn’t fully understand the biology, but in her experience, “there is a definite reinforcement from starvation in the brain. The brain has its own opiates.”

She doesn’t agree with Kaye’s hypothesis that food is less pleasurable for an anorexic. “All you can think about is food,” she says. “Any piece of food that you eat can have a tremendous amount of pleasure. But no matter how good that food would taste, it was accompanied by so much guilt and anxiety that it would be easier not to eat.”

“It grows like a fungus,” Grefe says of the disease. At some point, extreme dieters will progress from looking painfully thin to endangering their heart and other organs with starvation. “The line between the catwalk and the feeding tube is sometimes only a few pounds,” she says.

Wenda Reed is an award-winning health writer and frequent contributor to Seattle Woman magazine.

FOR MORE HELP AND INFORMATION

National Eating Disorders Association: Live Help Hotline,
1-800-931-2237; www.NationalEatingDisorders.org

The Emily Program, Seattle: 206-283-2220;
www.emilyprogram.com/seattle

Seattle Children’s Eating Disorder Program: 206-987-2028; www.seattlechildrens.org

Maudsley Parents: www.maudsleyparents.org

BEHAVIORAL TRAITS ASSOCIATED WITH ANOREXIA

Recent research suggests certain behavioral traits may be linked to the development of anorexia nervosa in some people. These include:

• Anxiety or Depression
• Perfectionism or overly detailed focus
• Shyness or a reluctance to engage in social activities
• Obsessive-compulsive tendencies
• Cognitive inflexibility (not being open to change
and making and following lots of rigid rules)
• Difficulty seeing the big picture
• Warped sense of long-term consequences

NEW HOPE
Better Understanding Leads to Better Treatment

Help for the anorexic person usually comes only after family or friends intervene and push for treatment.

Because of physiological and metabolic changes in the brain, “if the person is in a starved state, they can’t always participate in other therapy,” says Dr. Mary Ellen Trunko of the Eating Disorders Treatment and Research Program at UC San Diego.

Family-based treatment, also called the Maudsley approach, is one of the most successful methods for helping adolescents restore their weight. Lynn Grefe of the National Eating Disorders Association calls it the biggest advancement in treatment in the last decade. Although it was developed at Maudsley Hospital in London in the mid- 1980s, this family-centered approach has only been used in the United States for the past ten years or so.

Rather than blame parents and exclude them from the recovery process, which used to be the normal clinical response, family-based therapy treats them as a vital resource. Parents are trained to express sympathy and understanding about the child’s ambivalence toward eating, but to also be persistent in their expectation that starvation is not an option.

The approach requires a parent to be with a child full-time and to take an active role at each meal to ensure that their child eats. Later stages include having adolescents assume responsibility for their own eating and then finally helping them gain a healthy identity.
Rachel’s recovery involved a nine-week hospitalization at Seattle Children’s and the family’s introduction to family-based treatment.

“They brought us in and taught us meal coaching. We came to the hospital and coached Rachel in doing things to keep her mind off the food while eating. We played Boggle and other games for months,” her mother Carol recalls.

She is especially appreciative of Seattle Children’s approach to treating the whole family. “They don’t lay blame; they help you be part of the solution,” she says.

Individualized therapy, under best practices, is a part of any nutritional and medical treatment of anorexia whatever the age of the patient. And because there are so many biological, social and psychological factors involved with the disease, The Emily Program and others emphasize treatment designed to address each person’s unique challenges. People who’ve experienced sexual trauma, for example, will need to deal with that in the context of their eating disorder.
In addition to individual or family therapy, many patients also participate in group therapy, often organized around specific needs (such as sufferers of sexual abuse), by age and even by religion.

Rather than trying to change who a person is in order to treat their eating disorder, therapy now often focuses on working with the person’s character.

“If you’re wired to be more anxious or cognitively inflexible, those character traits are not a bad thing,” says Jillian Lampert of The Emily Program, speaking of how detail-oriented, obsessive people can be very successful in some fields.

“The person’s temperament is not going to change, so go with it” she says. “An introvert, for example, is always going to need more restorative time. We’re asking patients, ‘How do we manage our personalities?’ How can we use our character traits for good?’”

Although a person’s temperament doesn’t change, dysfunctional thinking patterns must be altered. Cognitive remediation therapy is another new approach that addresses this and relies on brain exercises to help patients overcome deficits. “We help people develop flexibility by putting them in uncomfortable situations and help them through it, with lots of support,” Lampert says of the method. “We can create new neural pathways.”

“They retrained my whole way of thinking and coping with things, so that I know that being super-thin and exercising all the time is not healthy behavior,” says Monica, who received intensive outpatient treatment at The Emily Program when she was 16. Three years after treatment, she is studying to be a teacher and does not have a problem with food. “I have a therapist I can call if I need to,” she says.

Erin, who relapsed in college, needed three months of inpatient treatment after her heart and kidneys began to fail. She now sees a therapist and a nutritionist once a week and a doctor once a month and attends a support group. She knows recovery will be a long process. “When I compare where I am now with where I was before, I’m hopeful,” she says.

It’s been 19 years since Lampert herself suffered from anorexia. “I don’t struggle with it anymore,” she says. “I do things to cope well with anxieties without using food or exercise.

“Some people say that eating disorders are like alcoholism — you never get better,” she continues. “I don’t agree. We’ve treated thousands of people and seen them recover.”

—Wenda Reed

©Copyright 2011, Caliope Publishing Company