Improving Treatment and Awareness of Eating Disorders

More than 400 clinicians, parents, and people with eating disorders attended the National Eating Disorders Association (NEDA) meeting in October in San Diego. The conference theme was “Eating Disorders Come in All Shapes and Sizes.”

How One Magazine Promotes Healthy Sizes

In a keynote address at the general session, Chandra Czape Turner, Executive Editor of CosmoGIRL! magazine, described some of the efforts the publication has made to promote healthy sizes and shapes. The monthly magazine, which reaches 8 million readers 14 to 22 years of age, has changed its editorial policies to promote healthy living among its young readers. The magazine also offers scholarships and award programs, such as “Born to Lead,” for young women who have made great accomplishments in their communities. One program, Project 2040, is designed to help get women into the top leadership tiers of every industry—and maybe even the Presidency, Turner said.

Turner noted that the magazine’s goal is to help girls feel happy with their size, whatever it may be, and to stress healthy lifestyles. For example, she told the audience there is an unwritten rule never to run an article on dieting, but instead to include articles about healthy nutrition and exercise. She added that the staff approaches eating disorders head-on, and is very careful not to give the “how-to” or go into details about the methods used to perpetuate an eating disorder. Instead, the focus is on information; for example, in a recent issue, an editor who once had an eating disorder shared her story. Another story followed a 19-year-old girl at the Renfrew Center, and described how long it took her to accept and change her behavior, contrasted by the reality that her insurance only covered 19 days of treatment. The magazine has included an article about boys with eating disorders, too—even though young men aren’t readers, most readers have brothers and boyfriends who may have eating disorders, Turner said.

Fashion’s dictates are based on clothing size. “Why was a size 10 the ideal in 1959?” Turner asked, noting that the February 2008 issue of CosmoGIRL! will present a more realistic and healthy body ideal, “showing that all shapes and sizes are beautiful.” The women depicted in the articles project a healthier, stronger, more beautiful image, whether they are short or tall, and most of all project confidence.

Some of the problems with the super-thin model image projected in magazines have to do with a simple fashion industry fact, Turner said: Designer clothing comes in sample sizes, and models are expected to fit into the clothing. Thus, if a model is a size 6 or 8, she must starve herself to fit into the samples, which are size 2. The fashion industry and media have a strange marriage, Turner said, adding that editors want to cover the latest fashions, but most clothing is made for a single and tiny body size. CosmoGIRL! staffers work to select models for their magazine who are healthy and strong. However, when an audience member pointed out that a recent issue had a super-thin young model on the back cover, Turner admitted that it is challenging because the editorial staff cannot control the advertising and often don’t see the ads until they re published.

“Boys and girls have to learn to see ads through a healthy lens,” she said, “so they can differentiate the ads from reality and not buy into them.” She added that the editorial staff of CosmoGIRL! hopes to do that by continuing to include articles that celebrate healthy differences in size, stressing accomplishment over dress size.

Comorbidity: The Most Important Target of Research Ahead

Dr. Michael Strober, Franklin Mint Professor of Psychiatry at UCLA School of Medicine and Director of the Eating Disorders program at the Neuropsychiatric Hospital, UCLA, told the audience that “Psychiatric disorders rarely stand on their own,” and added that “Comorbidity will be the most important line of research in the field of eating disorders in the next 10 years.”

Although until recently the emphasis was upon mood disorders, such as assessing rates of comorbid depression, the literature shows that the prevalence rates of depression in AN and bulimia nervosa (BN) are so varied that such studies are nearly meaningless, Dr. Strober said. Most cases of depression seem to develop after the eating disorders appear, and may actually be a result of malnutrition, he added. According to Dr. Strober, there is as yet no clear evidence that bipolar disease has a strong link with AN or BN, and it does not occur in substantially greater rates than in the general population. There is also little evidence that bipolar disease runs in families of those with AN or BN, he said. Dr. Strober pointed out that it is important to consider the chronology of onset of comorbid conditions and the eating disorder and to examine which came first, the eating disorder and then depression, or the eating disorder and other conditions. In AN and BN, there is no evidence to date that a person with depression will have a different course of an eating disorder than one without depression, he said.

Antidepressants are useless in the presence of malnutrition. Dr. Strober also criticized the common practice of quickly prescribing antidepressants for AN patients in the presence of malnutrition. Antidepressants are usually useless if given when the patient is malnourished, he stressed, and added that antidepressants compromise the ability to determine a baseline mood. While this is not significantly harmful to patients, it still happens in the face of evidence that antidepressants have no therapeutic utility whatsoever in malnourished patients such as those with AN. Delgado and colleagues have shown that antidepressants (especially the SSRIs) become ineffective in depressed persons when they are placed on a calorie-restricted diet. Depression will wane substantially after one week of refeeding, he noted.

Anxiety: the major comorbidity in eating disorders. In contrast to depression, anxiety is the major comorbidity among people with eating disorders, especially patients with AN and BN, he said. Anxiety occurs at intriguingly high rates in persons with eating disorders, Dr. Strober stressed. And, he pointed out that unlike depression, anxiety disorders almost always precede the onset of disordered eating attitudes and dieting. He added that at least one form of anxiety disorder can be found in 60% to 80% of patients with AN and BN. In addition, anxious temperaments, which include discomfort with change, avoidance of new or unexpected things, neuroticism, inhibition and rigidity, for example, are conspicuously present in people with AN or BN, often years before the eating disorder appears. And, if they aren’t present before, they develop relatively soon after the onset of AN and persist, he added.

Dr. Strober also noted that patients with eating disorders often have a family history of elevated lifetime rates of anxiety disorder. For example, obsessive-compulsive disorder occurs in roughly 25% of relatives of people with AN, compared to the general population, where there is a family history of anxiety disorder in 5% of relatives.

New studies of the brain circuitry in the face of chronic anxiety and fear-related behavior show that AN is an illness that is organized around fear, extreme and persisting hypervigilance and dread and apprehension, he said. Dr. Strober added, “We are learning a great deal about the genetics and biology of anxiety and we can actually see the effects in the brain through functional and structural imaging.” This may help researchers find the areas of the brain where some aspect of susceptibility to anxiety originates.

AN is so persistent and protracted because of the power of fear, and fear is a critical survival mechanism, he said. Dr. Strober predicted that in the next decade of research a new model of AN will develop that will help us understand why some patients are so much more resistant to treatment, and this research will be accompanied by good competent psychotherapy, he said. Research will point to areas of the brain related to fears, including fear of learning, and areas of the brain that work to calm the other areasif those are not functioning properly, it is very difficult to treat the hypersensitive areas of the brain. All of this research has extremely important ramifications for our understanding of AN, he said.

Body Image and the Power of Change

Ann Kearney-Cooke, PhD, a distinguished scholar for the Partnership for Gender Specific Medicine at Columbia University, New York City, where she developed the Helping Girls Become Strong curriculum, told the audience, “We are a culture that doesn’t believe that healthy bodies come in all shapes and sizes, and a culture that sexualizes the female body.” She urged clinicians and parents to “Get outside of the box, to see the mystery of change,” and to ask hard questions to help combat eating disorders. In the last decade, she noted, genetic studies have pointed the way to improving treatment and helping dispel old stereotypes about AN and BN. For example, she pointed out that even the stereotypes about eating disorders among ethnic groups are changing and stereotypes are falling away. An example of this can be seen by the fact that earlier reports that African-American women had less rigid body image standards than Caucasian women are now being replaced by later research showing that African-American women are also trying to achieve a very thin body image.

A need to start healthy approaches earlier. We need to begin to develop health and wellness approaches early in childhood and to incorporate these, she said, to better understand the meaning of body image, ethnic issues, and control. We are seeing that many studies, regardless of race, body image, and weight, concern how the media stresses thinness. There is also clinician bias, she said, and clinicians themselves may have stereotypes of eating disorders.

Internalization, projection, culture, and identification. Dr. Kearney-Cooke also stressed that fluctuations in eating disorder symptoms can be predicted by body image. “We need to intervene from many directions,” she said, adding that one way to improve intervention is realizing that internalization, projection, culture and identification all come together in different ways to lead to a positive or negative body image.

Internalization of external experiences, including traumatic experiences such as sexual abuse, all become part of the way people see their body image, Dr. Kearney-Cooke said. She noted that the use of guided imagery to change the image is very powerful. In one exercise, patients are asked to find a place in the room where the body or part of their body doesn’t fitfor example, an arm into a bookshelf. After a time the body part becomes sore, and the clinician can say, “This is what happens when you try to force yourself or your body into a situation where you do not fitit hurts.”

To combat negative internalization, guided imagery can also help clients develop a positive new image, she added. Dr. Kearney-Cooke said that “All of us are affected by the images on commercials and television and the messages to look a certain way. It is very important that we as mothers and fathers work to help our children develop a healthy body image,” she said.

Projection, the third element, can be thought of as a screen on which the person projects negative thoughts about herself, she said. A college student leaving class and walking down the street may think her thighs are hugeand she won’t eat anything as a result of this. This has more to do with other events going on than with the body itself, she noted. Dr Kearney-Cooke has developed encoding sheets upon which clients keep track of the incidents when they feel negative about their bodies. They are asked to think about what is distracting them from the real cause and to record these thoughts on the sheet.

Suggestions from Parents of Adult Patients

Bill Doyle and Judith Clifford, two parents of adult children with eating disorders, offered some practical advice for other parents who have adult children with eating disorders.

Bill Doyle, a banker and parent of three daughters, one of whom is recovering from AN, shared his experiences and strategies his family used to help his daughter. His daughter developed AN while in her junior year of college. Within four short months, the once-champion swimmer who was active and successful in the classroom developed the symptoms of AN. There were no warning signs or clues, even from her friends and college counselors.

An initial mistake Doyle and his wife made was thinking that because their daughter was a young adult she could make her own rational decisions. They quickly learned that eating disorders “don’t operate on an age-appropriate basis,” as their daughter fell into a spiral of physical problems and psychiatric admissions, and nearly died twice. One of the biggest learning points, Doyle said, was adjusting their expectations so that their daughter could exist in an environment where she could make decisions but understand there were consequences.

Dealing with privacy laws. Privacy became a huge issue, as the Doyles ran up against privacy laws that kept them from learning about their daughter’s true situation. Because of fears of breaking the law, even college counselors and therapists could not share information with the distraught parents. Because of the secrecy of eating disorders patients and health information privacy rules, parents often don’t know what is going on, he said. He urged parents to “Stay in their facedon’t give up your seat at the table; you can respect your child’s privacy but don’t give up.” He and his wife sent a barrage of letters to their daughter, her psychiatrist, and therapist. Doyle even visited a therapist himself to learn about the ground rules of privacy. A few times when they met and he saw that their daughter’s therapist wasn’t getting the full story, Doyle and his wife made sure they added information about their daughter’s behavior at home.

Insurance coverage also was a challenge. Doyle had to assemble his daughter’s entire medical file, including some confidential material the company requestedit was a terrible experience, he noted, because his daughter felt her privacy was being invaded. He also pored over his insurance policy because he was told that his daughter was over 18 and would need her own policy. He advised parents to always know their policies thoroughly and to carefully read every line and word in their insurance policies. By doing so, he found that as long as his daughter was considered a student on leave from college, she could stay on the family’s policy and would not have to reapply for a year. He also found a clause in the policy stating that if a child cannot operate in an age-appropriate way, she could stay on the policy and her condition would be reviewed in 8 to 10 months. “Know your insurance inside and out,” he stressed.

Finances can also be a nightmare when a young adult with an eating disorder borrows money and uses credit cards on spending sprees. At first the Doyles paid off their daughter’s credit card debt and even paid her rent, but then realized that they were just enabling her destructive behavior. Doyle urged parents to watch financial matters carefully because their child is ill. There are serious consequences and parents need to help, but they also have to draw a line to help their children.

Parents also must be united in dealing with their children, he said. He suggested that parents leave their “emotional baggage” behind when a child does something that has significant consequences. It is difficult to do so, but a 22-year-old may have the functionality of a 12-year-old, he said. Try to forget what happened six months ago, and keep working on healing as a family, he advised.

Another parent’s experience. Judith Clifford described her experience as the mother of a 27-year-old daughter who is recovering from AN. Unlike the case with the Doyles, her daughter developed AN at 12 years of age, and she received treatment early on. Currently their daughter is living on her own in Los Angeles, where she sees a doctor who monitors her weight.

Clifford’s daughter presumably recovered from her eating disorder in high school and after graduating from high school went off to college. After one term, she collapsed and was hospitalized near death. Although their daughter was 19 years old and in residential treatment, Clifford’s husband was declared the girl’s guardian for health-care decisions. The daughter was very resistant to treatment and resistant to the idea that she would ever get well.

Going to court is simple but emotionally wrenching, Clifford said, and she advised parents to hire their own attorney. The most difficult part of gaining guardianship over their adult child, she said, was getting on the stand and testifying as to why they thought their daughter could not make her own health-care decisions. Although it was humiliating to their daughter, it enabled the family to work as a team with the daughter’s doctors, even with privacy laws. It was easier to do this because she was a child when they began working with the doctors, and the parents had the mindset that she was a child and they needed to do whatever they needed to do, said Clifford. Their daughter’s rights were restored a year ago, and she is doing well and today is grateful to her parents for saving her life.

“The moment when control is taken away is the moment when responsibility is taken awayit leads to relief that is tortuous but the patient feels grateful not to be in charge anymore and not to be responsible,” Ken Doyle told the audience. He added that AN is difficult to treat and to recover from, and there is no real agreement about how AN develops or about the value of coercion. “Eventually, we hope people and insurance companies will understand that AN is an illness, not a choice.”