Click on "disclaimer" on the website ceruleanbutterfly.com and instead of the standard fine-print legalese, you get a rant. "If you don't have an eating disorder," it says at one point, "I wonder what the bloody hell you're doing here. If you've come to yell at us, please realize that it's pointless--we're going to ignore your point of view just as you ignore ours."
The creator of Cerulean Butterfly--one of some 500 websites that deal frankly and sometimes approvingly with anorexia and other eating disorders-- is an intelligent, articulate 19-year-old San Francisco college student who asked to be called only Lizzy. Treated at the Lucile Packard Children's Hospital in Palo Alto, Calif., Lizzy has been anorexic since 2002 and is quite candid about her belief that an eating disorder is less a disease than a lifestyle choice--a "decision to pursue perfection." In March 2004 that pursuit landed Lizzy in the hospital, her weight having dropped to 88 lbs. and her heart rate to 45 beats a minute. "[I] was surrounded by the skinniest people I had ever seen," she wrote on her site. "Can we say 'envy'?"
Welcome to the underground world of pro-ana (ana, short for anorexia, the quest for thinness through starvation) and pro-mia (for bulimia, a related condition characterized by bingeing and purging) websites, weblogs and message boards, where people with eating disorders gather for support and companionship. On pro-ana sites, girls as young as 10 share tips for losing weight (purge in the shower to cover up the sound), tricks for hiding the signs of malnutrition (use nail-growth polish to keep nails from becoming brittle) and "thinspiration" (like photographs of bony fashion models).
Nobody knows for certain how many of the estimated 11 million Americans suffering from anorexia or bulimia visit those websites. Lizzy says hers, which has been online since 2003, has logged more than 85,000 hits, and a survey last May of adolescent anorexics and their parents conducted by researchers at the Stanford University School of Medicine found that 39% of the kids were visiting pro-ana forums. "Clearly, these sites serve a need for our patients, because they spend an extraordinary amount of time and energy creating and visiting them," says Dr. Rebecka Peebles, an eating-disorder specialist at Packard Children's who co-wrote the report with student Jenny Wilson.
The adolescents in Peebles' and Wilson's study who entered pro-ana websites tended to do so without their parents' knowledge and, compared with their peers who didn't visit the sites, to spend less time on homework, more time on the Internet and more time in the hospital. But the study did not find major differences in body weight, duration of eating disorders, number of missed periods or bone density between anorexics who visited the sites and those who didn't. Lizzy says the mission of her website is to provide support for people who already have eating disorders, not to encourage or promote self-destructive behavior. "The term pro-ana I think is widely misunderstood and misused," she says. "Most people hear the phrase and immediately think that we're ringing bells on a corner somewhere in cyberspace, wearing sandwich boards that say ANOREXIA IS AWESOME and handing out pamphlets."