Look for online information about eating disorders, and you’ll be bombarded with material from the National Institutes of Mental Health, advocacy organizations and non-profits, treatment centers, academic researchers, and eating disorder sufferers and their loved ones. The quality and accuracy of information on these sites can vary widely, as can the virtual support that some of them provide.
Among this information, you may come across scary-sounding stories about pro-anorexia sites. Some eating disorder groups say the sites promote anorexia as a “lifestyle choice” and contain tips to help sufferers lose weight and conceal their disorder from loved ones.
Instagram and Pinterest have already banned users from sharing “thinspiration” and images that glorify eating disorders, and now Italy’s Parliament has proposed going one step further. In June 2014, legislators proposed a bill that would criminalize any author of a pro-anorexia site with a fine of €10,000 to 50,000 ($13,000 to 67,000) and up to a year in jail. Advocates of the bill say it will help send a powerful message about the need to take eating disorders seriously.
But some researchers who study pro-anorexia sites, clinicians who treat the disorder, and users of the sites themselves believe this is a dangerous step.
“This will only force these groups further underground and further to the fringe, placing users even more at risk,” says Antonio Casilli, a sociologist at ParisTech and lead researcher on the ANAMIA project.
It’s all too easy to peg pro-anorexia sites as a shocking, recent phenomenon. Although they only came on Rebecka Peebles’ radar in the early 2000s, the adolescent eating disorder physician at Children’s Hospital of Philadelphia says they’re likely as old as the Internet itself.
Ana Gandley runs Project Shapeshift, one of the oldest sites for individuals with eating disorders. A soft-spoken redhead, Gandley isn’t the predatory anorexic kingpin that many believe run these sites. She does refer to her site as pro-anorexia, but she uses “pro’” to mean “proactive about health” rather than “in favor of.” Ana started visiting the site in 2002, after finding herself judged and blamed for being unable to recover with available treatment. Gandley acknowledges that some pro-anorexia sites glorify the disorder and encourage people to follow dangerous weight loss strategies, but other sites, like hers, are labeled pro-anorexia because they allow sufferers to openly talk about the ugly details of life with an eating disorder. Project Shapeshift doesn’t try to force people into recovery.
Gandley neither pushes the site’s users towards recovery nor steers them away from it, believing firmly in the site’s tagline, “Because everyone needs support, no matter where one is along the journey.” Gandley prides herself on providing support to everyone with an eating disorder. As other social connections fall away as the disorder deepens, online support becomes increasingly important in a sufferer’s life. When Daphna Yeshua-Katz, a PhD student in telecommunications at Indiana University, interviewed the young men and women who had used these sites currently or in the past, she found that many of them espoused similar sentiments. She published her results in Health Communications in 2012.
“It’s very short-sighted to say that these are all websites that promote anorexia as a lifestyle,” says Yeshua-Katz. “People go to these sites for social support. When you suffer from anorexia, you also suffer social isolation. Every time you attend a social gathering, you eat together, you drink together. When you have anorexia, this is a huge challenge.” Online support doesn’t have these challenges, she says.
Project Shapeshift appears to be like many pro-anorexia sites online, says Casilli. “People find these sites by looking for weight loss tips or information about anorexia, but they come back because they find support and acceptance,” he says.
This isn’t to say the support is always positive, Casilli points out. Sometimes people on pro-anorexia sites encourage each other to engage in dangerous, harmful behaviors, but his in-depth analysis of the content on pro-anorexia sites indicates that this is generally the exception to the rule. Eating disorder sufferers are especially drawn to online sites due to their anonymity and lack of person-to-person contact.
“In order to attend in-person support groups, you often have to be ready and committed to recovery, which some sufferers aren’t,” Yeshua-Katz said. Although the pro-recovery movement is intended to help push people with eating disorders towards recovery, it can also leave sufferers feeling alienated and stigmatized if they are unable to take this step.
Many of the individuals Yeshua-Katz spoke to commented on the no-win situation in which they found themselves. To continue with the disorder was to cause unimaginable pain to family and friends, but to eat more and gain weight would cause unimaginable pain and anxiety to themselves. Online, they could communicate with others who understood exactly how they were feeling.
“It’s so hard to find your voice,” Gandley said. “My mission is for people to come as they are and—no judgment—be accepted.”
Many of the people with whom Gandley interacts are long-term sufferers of eating disorders that have been failed by traditional treatment. And they’re far from a minority—some studies estimate that only one-third of adults with anorexia recover. Insurance won’t pay for long-term treatment or adequate outpatient mental health care, leaving many eating disorder sufferers to cope on their own. “These sites are the only support many people have,” she says.
Both Peebles’ and Casilli’s interviews with users of pro-anorexia websites revealed profiles similar to Gandley’s. The vast majority of pro-ana site users were adults, not teenagers, nor were they necessarily emaciated. Some were clinically underweight, but most weren’t; many were average weight, overweight, or even obese. Around one in three users had ever been formally diagnosed with an eating disorder or had received treatment. That doesn’t mean they were any less ill than the emaciated girls we stereotypically think of as suffering from anorexia. “Their eating disorder-related thoughts and behaviors were completely off the charts, but doctors said they were too old or too heavy to have an eating disorder,” Peebles said. “These sites were often the only source of support these people had.”
Peebles does worry about her patients using pro-anorexia sites, just as she worries about them using many sites on the Internet, from pro-recovery sites to fitness chats to healthy living blogs. People with eating disorders can become competitive and perfectionistic, striving to be the “thinnest” in any group of sufferers. Peebles says that spending so much time around others with eating issues may help normalize obsessions with food and weight, especially for younger sufferers who haven’t been ill for many years—like those who comprise the vast majority of patients Peebles sees in her daily practice.
While Pinterest, Tumblr, and Instagram banned “thinspiration” photos on the basis that they were linked to self-harm, they continue to allow healthy living advice that isn’t necessarily so healthy, extreme diet and exercise hints, and so-called “fitspiration,” which some in the eating disorder community say is thinspiration disguised in workout clothes. Many of the slogans most closely associated with pro-anorexia rhetoric (“Nothing Tastes As Good As Skinny Feels”) are actually from commercial weight loss sites, as are many of the tips the sites share. Although some use pro-anorexia sites to “learn” how to be better at their eating disorder, many of these tips also exist in stories and television shows designed to teach people about the dangers of eating disorders.
Gandley feels that any distinction between pro-anorexia sites and some healthy living sites are arbitrary. “Yet if I lived in Italy, I could go to jail and be fined for providing the only support some people have,” she says. “Without these sites, I would have died.”
Casilli says that the Italian bill is based on several misconceptions. The first is that it’s even possible to ban these sites, which seems unlikely. The other is that the sites are universally harmful. While no one doubts that these sites have harmed some people, whether that gives the government the right to censor them is a different question.
“From a public health perspective, we shouldn’t address the issue of pro-anorexia simply by banning these sites. We need to focus on improving diagnosis and access to treatment,” Peebles says.
Criminalizing individuals who run pro-anorexia sites would be an additional blow that individuals with eating disorders neither need nor deserve. “The people who run them are mentally ill. They need help and support, not a jail sentence,” Yeshua-Katz says.