Starvation Nation: Inside a Groundbreaking Eating Disorder Facility
While most of America focuses on obesity, anorexia is claiming new patients in record numbers. At a cutting-edge treatment facility, we investigate the epidemic one expert is comparing to AIDS.
By Sophie Moura
Rachel Craig, 26, has suffered from an eating disorder since she was 11 years old.
Photo Credit: Melissa Ann Pinney
At 26, Rachel Craig has never had a long-term job, gotten her period, or moved out of her parents' house. She has the bones of an 80-year-old and, thanks to an adolescence spent in treatment centers, few close friends. She eats almost every meal at home with her mother. "Co-eating" is the only way she can keep her weight at 105 pounds, the minimum her parents set after she was rushed to the hospital last summer, near death at 61 pounds after living on sugarless gum for months. She's out of the hospital now, but recovery has been hard. "Anorexia's a competitive disease," she says, her brown hair falling over her shoulders. "You look at girls further along the recovery path and think they're getting fat." She's been sick for 15 years.
This is the reality of anorexia: patients in and out of hospitals for years, unable to grow up, their families desperate to end the secret starvation rituals. But at one new treatment facility, Denver's Eating Recovery Center (ERC), doctors are fighting the disease with cutting-edge techniques. Patients wear armband sensors that track every calorie they burn (they're sold as weight-loss tools ERC is the only place that utilizes them for eating-disorder treatment), and use biofeedback finger probes, which display heart rate and body temperature, to manage anxiety through breathing exercises. In "flexibility training" (originally developed to help traumatic brain injury victims), patients take a different seat in each therapy session or brush their teeth with the opposite hand. The change in routine creates new brain neurons, disrupting obsessive thoughts.
The Denver doctors say mixing these different tactics with traditional treatments, like movement and art therapy, is key to stopping the disease. Because today, 40 years after anorexia and bulimia started sending young white women to hospitals across the U.S., eating disorders have cropped up in kindergartners, senior citizens, boys, Hispanics, and African-Americans. No demographic is safe, and medical professionals are scrambling to combat what has become a burgeoning public health crisis. The most provocative analogy comes from Craig Johnson, Ph.D., who compares the spread of the sickness to that of HIV/AIDS. "The pursuit of thinness is 'contagious'" behaviorally, says Johnson, who has done pioneering research on the biological basis of eating disorders, and is now chief clinical officer at the Eating Recovery Center.
"We've moved away from this as a Caucasian, upper-middle-class, 'princess' disease. It's everybody's disease," says Dr. Ovidio Bermudez, medical director of child and adolescent services at ERC, which treats patients as young as 10. He's seen 13-year-old boys on the brink of kidney failure after shunning carbs and gorging on protein; 47-year-old mothers undereating and running 15 miles a day after a double mastectomy; 30-something housewives hospitalized during pregnancy to stop excessive exercise; and diabetic Ivy League med students manipulating their insulin injections. These new conditions "orthorexia," "pregorexia," "diabulimia" demand a daring, innovative approach.
Rachel Craig's anorexia started when she was 11, in the summer of 1996. She'd just finished fifth grade in Colorado Springs, 60 miles from Denver. An avid reader, she loved Madeleine L'Engle's A Wrinkle in Time, and playing softball with her younger sister, Anna. But the year had been hard for her. Her friends, a group of dancers, started a new clique without her. At 4'10" and 100 pounds, she was self-conscious. Boys at school called her fat; she felt like the chubby one in family Christmas photos. She swore that sixth grade would be different. She'd be thinner. Popular.
That summer, Rachel started jogging three miles a day. Researching nutrition, she discovered what calories were. As the months went by, she ate less. If she wasn't a little hungry, how was she going to get thin? By sixth grade, she'd lost 30 pounds, bringing a solitary plum to school for lunch. Any excitement she'd felt about being skinny was overshadowed by an obsession with food. When not eating in front of her classmates at lunch became embarrassing, she started making sandwiches diet bread, mustard, and lettuce so they'd think she was normal, but after school, she'd get straight on the StairMaster for 45 minutes a day. By Christmas, "I wasn't even aware of the world around me anymore. I was completely cut off," she says.
Horrified, Rachel's mother, Linda a phys-ed teacher at another middle school nearby transferred her there in January so they could eat lunch together. But Linda felt more helpless than ever as she watched Rachel pick every bit of pasta out of her wonton soup one day, hiding it in her napkin. At the new school, the popular girls were fascinated by Rachel and shared their Chapstick with her between classes finally, she had new friends. But by April, she weighed 50 pounds half her original weight. "We were in a panic," says Linda, who had suffered from her own eating disorder during college. Pediatricians, therapists, and emergency-room doctors were useless; Rachel's therapist said she needed serious help but offered no referrals. "We got kicked off the gangplank," Linda says, recalling her desperation. "We needed an anchor, but there was nothing in sight." At home, Rachel's parents would beg, threaten, and bribe her to eat. She'd apologize and promise to try, but the look on her face reminded Linda of a caged animal. The sockets around her blue eyes became hollow; she'd lapse into trances at night, babbling. Finally, her father checked her into a child psych ward at the local hospital. Too weak to refuse food, she ate, and emerged from her fog a few days later.
Relieved, her parents sent her to stay with her grandmother for the summer before seventh grade. By fall, she'd gained 50 pounds, and everyone thought she was fully recovered. "I'd never heard of eating disorders. I didn't know there was such a thing as eating too little," says Rachel now. Her mother has a different view. "My downfall was that when I had my disorder, I wasn't nearly as good at it as she is," says Linda ruefully. "I just always assumed Rachel would come out of it. I danced on the edge with my anorexia. She was all the way in the tank."
As an anorexic preteen in 1996, Rachel was a rarity in the mid-'90s, little was known about eating disorders in kids. Not so today. Between 2000 and 2006, eating-disorder hospitalizations for children under 12 more than doubled, according to the National Eating Disorders Association (NEDA). Experts blame teen stars, like Lindsay Lohan and Demi Lovato, who struggle publicly with eating issues, and say the Web worsens the problem by supplying unhealthy images a recent study even linked Facebook with eating disorders, finding that time on the site was tied to negative body image and dieting. And now men's magazines tout six-pack abs; Russell Brand has said he was bulimic; and Lady Gaga's boyfriend, Luc Carl, is writing a book about the "drunk diet" that helped him drop 40 pounds. The potent combination of 24/7 social media and celebrity obsession has created a dangerous cultural undertow for anyone prone to an eating disorder.
Unfortunately, science hasn't kept up with the growing patient pool. Research on eating disorders has always been underfunded, thanks to their reputation as women's diseases of vanity. In 2005, the National Institutes of Health gave out just $12 million in anorexia grants. And it's been hard to get public sympathy for a disease whose patients sometimes seem complicit in their own suffering. At ERC, for example, staffers recently noticed a foul smell in one of the bedrooms. They soon uncovered the source: a shoe that a patient had craftily stuffed full of bits of food from almost a week's worth of meals, then stashed away. (Clogs, hooded sweatshirts, and shirts with pockets are discouraged at mealtimes for this very reason.) Doctors have made strides in understanding the genetic nature of eating disorders, finding that women with family histories of anorexia are 12 times likelier to get it. (Scientists haven't pinpointed one eating-disorder gene; the interplay of several is likely the catalyst.) Advances like these have helped increase awareness, bumping eating-disorder funding to an estimated $27 million in 2011, although, by comparison, breast cancer research will total $763 million.
Treatment has come a long way since the mid-'70s, when anorexics were force-fed high-calorie "malteds" and given electroshock therapy. But results are still hit-or-miss, even at state-of-the-art centers like ERC, where doctors talk about the "rule of thirds": A third of patients get better in one to three years; a second third in four to seven years; and the final third take much longer. For patients who are sick for more than 20 years, one study suggests 20 percent die from the disease or suicide.
Doctors do know that eating disorders, which are involuntary and genetic mental diseases, like depression, schizophrenia, or OCD, follow a pattern. Patients with a certain character trait "high harm avoidance," in medical-speak are more easily upset by puberty or big life events. To get control, they diet. Sounds innocent: Who hasn't wanted to slim down before a new job or a wedding? But in certain people, weight loss exposes a genetic vulnerability to an eating disorder.
What makes the disorders so hard to treat is their way of turning the body's normal regulatory mechanisms against themselves. Malnutrition slows the brain's hormone production, "numbing" intense emotions. So as anorexic patients starve, they feel calmer. Hunger pangs are now a reassurance they won't get fat. In another twist, the more weight they lose, the fatter they see themselves. It's not a problem with their vision. The more they starve, the harder it is to keep going the body wants to eat. So the mind produces motivation in the form of an obese reflection rippling with rolls of fat. The delusion is a rationale for continuing to starve, created by brain chemistry doctors don't understand.
Seventh grade was great for Rachel. She got A's and made friends, and her weight hovered around 105 pounds. Then, in eighth grade, things got worse. While her mother, Linda, ran the school concession stand, Rachel sat in the back eating chocolate bars. Upset by her weight gain she was 25 pounds heavier by ninth grade she started vomiting. From age 13 to 16, she'd skip breakfast and eat a tiny lunch. At home after school, she binged on Twinkies, Little Debbie cakes, and peanut butter mixed with vanilla ice cream. Then, panicked, she'd run to the upstairs master bathroom, lock the door, flip on the radio, and run the bath. Sitting in the tub, she'd vomit into a 54-ounce Big Gulp cup, emptying it into the toilet. She'd shower, clean up, and eat a small, healthy dinner to avoid suspicion.