For nearly 40 years, Sharon Pikus hid what she calls her “dirty little secret”: After an adolescent case of whooping cough caused her to vomit everything she ate, she turned the experience into a trick to lose weight.
“I was always a chubbette as a kid, so I said to myself, ‘This is terrific — I can eat whatever I want and throw it up,’ ” recalled Pikus, now 60.
She kept up the habit for decades, eventually having to hide it from her husband and children. Even as other parts of her life were in place — her family was happy, her business was successful — her bulimia lurked under the surface, an overwhelming compulsion.
“It is an obsession, like an addiction to food,” she said. “You can just go eat [and] eat, but you have to throw up, and then you have to mask it.”
For Nancy Malvin, problems with eating began when she was 13. She came home from school one day devastated by unexpected teasing from her classmates. The incident sent her on a downward emotional spiral, which she later recognized as the onset of her lifelong battle with anorexia.
“She began losing massive quantities of weight and lying about how much food she was eating,” her sister Jennifer Malvin, now 53, remembered.
For the next four decades, Nancy tried every treatment she could find, battling her disorder ferociously.
Eventually, her weight plummeted to a terrifying 60 pounds, and her body began to fail. In the last few years of her life, Jennifer says, Nancy needed a pacemaker. With no fat cushioning the soles of her feet, even climbing stairs became painful. Her teeth fell out, Jennifer said, and “she lost her beautiful hair.”
Nancy was not at a loss for information about her eating disorder. She understood what had triggered it, had been through massive amounts of therapy in an attempt to get well, and was brilliantly analytical and insightful. “She worked on herself all the time,” her sister said. “But she used to say, ‘At the plate, I can’t follow what my brain is telling me.’ ”
By the time Nancy died as a result of complications from her disease at 51, her liver had failed. Her husband came home to find her unresponsive on the floor, and paramedics were unable to revive her.
Doctors remain baffled by the psychological causes that make people like Sharon and Nancy turn outside events into rituals of starvation or binging and purging, but it’s a question that is in dire need of an answer — anorexia has the highest mortality rate of any psychological disorder, with anywhere from 4 to 8 percent of people who struggle with the disease dying as a result of it. Bulimia is not far behind; just fewer than 4 percent of those with the disease eventually die from complications.
There is, however, some good news: Researchers are making headway in understanding the roots of the disease. Eating disorders, they’ve discovered, likely begin with a certain gene or combination of genes. From there, external factors like family dynamics and cultural pressure trigger those genes into action.
In other words, said Lynn Grefe, president and chief executive officer of the National Eating Disorders Association, “You are born with the gun, and life pulls the trigger.”
It’s taken researchers many iterations of theory to get to this point. Years ago, for instance, it was widely believed that parents were the cause of eating disorders. Given that symptoms are most likely to appear during the throes of adolescence, experts believed that budding teenagers in families with exceedingly high expectations were cracking under the pressure of overbearing parents or societal pressures.
“In the olden days, we used to say that perfectionistic families, those that dealt poorly with conflict and those that weren’t willing to address disputes, were the families that anorexia would show up in,” said Dr. David Rosen, the chief of the teenage and young adult health section at the University of Michigan Health System. “There is less sense now that those family dynamics are as important — they play a role, but more in how [the disease] gets perpetuated over time than how it develops.”
Anorexia and bulimia were also once believed to be the sole province of successful, high-achieving affluent white girls — a prototype that easily applies to many Jewish girls. And while young women with those characteristics are not unusual patients to see, Rosen said, now “we see boys and people of color and of every socioeconomic background; eating disorders have become equal-opportunity illnesses.”
Another myth is that eating disorders are a byproduct of unrelenting advertisements and entertainment featuring impossibly thin women. While those images certainly aren’t a positive influence on girls, they also don’t single-handedly cause disease, said Cynthia Bulik, director of the eating disorders program at the University of North Carolina at Chapel Hill.
“It’s so convenient to have these face-value explanations; it makes sense [to people] that the media shows skinny people, and that must cause eating disorders,” she said. “It’s a simple explanation, but it’s an inaccurate explanation.”
The fact that eating disorders have genetic underpinnings has been accepted in the medical community for more than 10 years, after a number of studies were published that demonstrated a familial tendency toward the disease. One such study was published in the American Journal of Psychiatry in 2000. Researchers looked at 2,163 female twins, and by examining the women who were found to have anorexia, concluded that when it comes to the likelihood that someone will develop the eating disorder, genes play about a 58 percent role.
In the same year, researchers at UCLA and the University of Pittsburgh compared the likelihood that a relative of someone with anorexia or bulimia would also develop the disorder, compared to relatives of people without either disease. They found that among family members of participants with anorexia, the rate of the disease was 11.3 times as high as it was among relatives of healthy participants. For relatives of bulimic participants, the rate of bulimia was 4.3 times as high.
Researchers are using this information to guide them in their studies; many are now trying to pinpoint a specific gene or group of genes that these families have in common.
In the meantime, experts have been able to identify certain personality traits that might make people more susceptible to anorexia or bulimia. Individuals with both disorders tend to be obsessive or perfectionists, and many steer unusually clear of risk. Bulimics often have an added tendency toward impulsivity.
People with eating disorders also face a high likelihood of having a concurrent psychological problem. Many suffer from obsessive-compulsive disorder or depression, and a study published in the American Journal of Psychiatry in 2004 found that fully two-thirds of those who suffered from anorexia or bulimia had some type of anxiety disorder.
Dr. Walter Kaye, the director of the eating disorders treatment and research program at the University of California, San Diego, links this finding to what experts call a tendency toward harm avoidance.
“Harm avoidance is a construct that we define as ‘anxiety in addition,’ ” he said.
Bulik believes that this overwhelmingly high rate of anxiety may provide an important insight into what’s going on physiologically for people with anorexia. After observing anorexics in recovery struggling to start eating again, she suggests that starving may in fact soothe their anxiety.
That, she says, may be a large clue as to where genes and culture collide.
“In sixth grade, when all the girls go on their first diet, nine out of 10 find that diet really unpleasant, and they’re like, ‘Forget it,’ ” Bulik said. “That 10th girl has the learning experience that when she reduced her food intake, she felt better — there is the nexus where her biology set her up to be influenced by that environmental fact.”
Using what they know about the workings of the brain, scientists have also been able to identify a difference in the neurological functioning of those with eating disorders. A 2007 study of 15 existing papers found that people with anorexia or bulimia had more difficulty with set shifting — the cognitive ability to switch easily between tasks, activities or ideas — than the average person. This may account, wrote the authors of the study, for the rigidity that often accompanies eating disorders — the strict diet of an anorexic, the ritualistic purging of a bulimic.
Even as characteristics that may lead to eating disorders are identified, experts agree that, like any other personality trait, they can’t be erased; they can only be managed. The goal of recovery, then, is to help patients understand themselves better and learn ways to cope.
Keesha Broome, a marriage and family therapist who works as the clinical director at Monte Nido, an eating disorders treatment facility in Malibu, said that treatment should help patients get back into the real world with both coping skills and living skills — ways to manage their anxiety, for instance, alongside practical proficiencies like shopping for food, cooking and incorporating exercise in a healthy way.
But the primary purpose of therapy, she said, is to delve into how the disorder has been used as a coping mechanism.
“The goal is, in part, to help a client develop insight into what function or functions the eating disorder serves,” Broome said.
For many patients, that means learning how to deal with their feelings in a productive way instead of turning to food for comfort or a sense of control. It could be as simple as knowing when to call a friend to talk, or listening to uplifting music, Broome said.
In order for therapy to work, patients need to be medically stable, and for that reason, treatment may also involve medical interventions to return the person to a healthy weight. From there, patients often work with a nutritionist, as well as a psychotherapist and family or group counseling, if necessary.
No psychiatric medication has been approved yet for the management of eating disorders. Some doctors use Prozac in treating patients with bulimia, but the antidepressant doesn’t have a predictable track record.
For patients under 18, another treatment method that’s gaining popularity is a family-based approach. Developed by researchers at the Maudsley Hospital in England and later popularized in the United States, the method encourages parents to take control of their children’s eating at home.
“Family-based treatment asks parents, initially, to manage restrictive eating and dieting and over-exercise,” said Dr. James Lock, a professor of child psychiatry and pediatrics at Stanford University, “just as we would ask parents to help minimize behaviors around alcohol or substance abuse or conduct problems.”
While the technique has been shown to improve symptoms in about 80 percent of kids, Lock said, it’s not for the faint of heart. In the 2010 memoir “Brave Girl Eating,” Harriet Brown, a mother who used family-based therapy to nurse her anorexic teenage daughter back to health, documented her experience “cajoling, pleading, ordering” her child to eat.
Research into the causes and treatments of eating disorders has a long way to go, but experts believe they are on the right track. Bulik is currently involved in a study that will look at the genetic makeup of more than 4,000 patients from around the world in an ongoing attempt to pinpoint specific DNA at the root of the disease. She hopes to publish the results later this year.
Other researchers, like Kaye, are using brain-scanning technologies to understand what happens neurologically for both those who are in the throes of an eating disorder and those who have recovered.
Pikus, now an active and outspoken member of her New York community, counts herself among the recovered. She is heavily involved with Jewish organizations and women’s health groups, and said that her desire to binge and purge is all but gone. She now shares her experience with the hope that her honesty will reach others who are suffering.
“I’m very open about it,” she said. “If I can help somebody, I want to do that.”
And Jennifer Malvin stresses that while it’s too late for her sister Nancy, others who are struggling with the debilitating and confusing disorder must not lose faith.
“I don’t want to see another child have to go through this,” she said. “There are resources out there — it’s not hopeless.”