"Thinspiration." "Ana." "Mia." "I love you to the bones."
This is the vocabulary of a burgeoning subculture of web sites known as "pro-ana," meaning pro-anorexia. Created primarily by young women who have anorexia or bulimia, or are in recovery from one or both of the disorders, these sites have been making headlines and horrifying parents and doctors for several years.
The sites speak of anorexia and bulimia as if they were almost human, hence the names Ana and Mia. The illnesses are treated almost like beloved but demanding and relentless old friends. They feature photos of rail-thin actresses and models as "thinspiration," and offer tips on suppressing hunger pangs and hiding the evidence of missed periods or vomiting spells. But what's most important, say the sites' creators and visitors, is the support they find from people who understand what they're going through.
"It's a place where we can find like-minded people," says 19-year-old Lizzy, a young woman from the San Francisco area who's created one of the better-known "pro-ana" sites. "Most people don't understand what it's like: They see anorexia as a disease to be cured, but they don't realize that it's also a mental demon that you have to deal with every day. At sites like mine, people can talk about what they're feeling without being judged."
There's no doubt that sites like Lizzy's are shocking and troubling. "Imagine if there were web sites encouraging people not to get treatment for cancer, or celebrating how great it is to have diabetes," observes Doug Bunnell, PhD. "They promote a myth that eating disorders are choices, rather than a physical and mental illness."
But are they doing real harm, or are they just provoking a lot of controversy? Bunnell thinks they're doing serious harm. "In my group of patients, these things are really damaging. Patients are supported in their illnesses and encouraged to stay ill by these web sites," he says. "Anorexia and other eating disorders are notoriously difficult to treat, and one primary reason is because the patient's wish to get better is an ambivalent wish. Things drawing someone toward that illness can be quite damaging."
First Study of Anorexia Sites
Until recently, no studies have looked at the real-life usage of pro-ana sites by people with eating disorders, or at the health effects that might go hand in hand with visiting such sites. In May 2005, Stanford researchers presented the results of what they say is the first study designed to assess the health impact of visiting these sites, which outnumber "pro-recovery" web sites by a factor of five to one.
The results weren't as clear-cut as you might expect, explains Rebecka Peebles, MD, a specialist in adolescent medicine at the Lucile Packard Children's Hospital. She co-authored the study with medical student Jenny Wilson. It's clear that adolescents with eating disorders are using the sites -- 40% of those responding to the survey had visited pro-anorexia sites. But nearly as many -- 34% -- had visited pro-recovery sites, and about a quarter visited neither.
Did those who spent time on "pro-ana" sites have more health problems, or more difficulty in recovery, than those who didn't? Yes and no. Although respondents who visited the sites reported spending less time on school work and more time in the hospital, in terms of many other health measures, they seemed no different than the other respondents. Factors included their weight compared with their ideal body weight, the duration of the eating disorder, their number of missed periods, and whether or not they appeared to be developing osteoporosis.
"They didn't necessarily seem to have a 'sicker' health profile, which surprised us," says Wilson. "Now, there are a lot of things that make someone sicker beyond just their weight or how many times they were in the hospital, but it's very interesting that the basic health outcomes didn't show an enormous difference." She and Wilson want to follow up their initial study with a larger, prospective study that may help them understand their initial findings better.
"We as providers worry that these sites are harmful, and of course we feel that they must be. We counsel teens to not use them, and I think we probably need to know more accurately just what kind of effect they have," Peebles says. "There are so many battles that we have to fight when we treat a patient with anorexia or bulimia who's an adolescent, we deserve to know if they're truly harmful or just shocking. If it really doesn't have an effect on their outcomes, there are other things to invest time in."
Anorexia Sites Offer Lessons to Be Learned
While it's far too soon to come to that kind of conclusion, Peebles notes that there are things that parents and health professionals can learn about young people's needs from the "pro-ana" sites.
"It appears that there is a subset of patients who are particularly curious and vulnerable to web sites. They're really seeking information about their illness, really questioning," she says. "How can we address that need for information in a way that's more positive?"
It's not easy. There are a number of good pro-recovery sites, Peebles observes. One of the best-known and most popular is www.somethingfishy.org. But even such sites can be misused to encourage unhealthy behaviors.
"No matter how positive we try to be in our portrayal of information, when you have an eating disorder, you have a very distorted world view and hear what you're interested in hearing," Peebles says.
If, for example, a bulimic in recovery posts the story of how she used to make herself throw up by using a toothbrush, an adolescent with bulimia will likely skip the paragraphs about how horrible the experience was and simply walk away with a new tool for purging.
What's more, many pro-recovery sites, no matter how well done they are, are created by parents, doctors, counselors -- in short, adults.
"They're not specifically aimed at teens and very young adults, or created by them, and they don't necessarily provide the same level of understanding or forum for expression," says Peebles. "It illuminates what we need to be searching for in terms of a better forum: something that can make someone who's ambivalent, and needs to express both feelings, feel comfortable."
That's a complicated proposition: how do you create such a site that remains teen-friendly, but doesn't worsen the eating disorder, while at the same time not making it patronizing? Peebles hopes future research will shed light on that question, but acknowledges that it's a challenging task.
Lizzy, for her part, says she strives to make sure her site addresses the dark realities of eating disorders, rather than merely glamorizing them. "Most other pro-ana sites are just all, 'Yay ana! It's the best!' They don't show how awful and horrible and miserable it is," she says.
Often, people will email her asking that she "teach them" how to be anorexic or bulimic. "That scares me. I tell them to read the sections about how it's not fun and games. It's not glamorous. I want them to know about the pain and the physical damage that comes from it, how you're cold all the time and you can't walk up the stairs because you have no energy. How your hair falls out and your skin gets all gross and yellow, and you start burning your muscles and the organs. People don't think about that."