A groundbreaking new research study from Indiana University suggests there may be benefits to the controversial activities of "pro-ana" bloggers, the online community for people with eating disorders.
Most of the 33 bloggers from seven countries interviewed for the study, which has just been published in the journal Health Communication, said their writing activities provide a way to express themselves without judgment, which the authors believe can be crucial to their treatment.
"We don't know what are the effects of participating in this community on health," said Daphna Yeshua-Katz, a doctoral student in telecommunications in the IU College of Arts and Sciences. "But we do know that the current therapy for eating disorders is not effective."
"These communities are providing support, albeit supporting an illness that may result in someone's death," added Nicole Martins, an assistant professor of telecommunications at IU. "But until they're ready to go and seek recovery on their own terms, this might actually be a way of prolonging their life, so that they are mentally ready to tackle their recovery process.
"From the outside looking in, this looks like a really disturbing community, but I think that the fact that these women are able to find support from one another and find a place where someone understands what they're going through is a really good thing," Martins added.
They acknowledged that the study findings are different from media coverage and other research about the pro-ana community.
The National Association of Anorexia Nervosa and Associated Disorders in 2010 reported that eating disorders affect more than 11 million people in the United States alone. Anorexics lose between 15 and 60 percent of their body weight and are susceptible to osteoporosis and heart ailments that can lead to death. It is viewed as a mental illness.
Little is known about the "pro-ana" online community because of the closeted and secretive nature of its members. The IU study is believed to be the first one to focus on interviews with the bloggers. Previous research in this area has centered on content analysis of what these people, mostly women with the disorders, are writing.
The researchers reached out to 300 bloggers and received a 10 percent response -- a statistically significant response. Both men and women with eating disorders were approached, but only women participated. Participants ranged in age from 15 to 33. Most were attending high school or college, and all lived in countries where anorexia is most common. About two-thirds lived in the United States.
Yeshua-Katz said many bloggers express themselves through song lyrics, music and photos that they call "thinspiration," which are very controversial. Complaints from eating disorder support groups have led Internet service providers to shut down pro-anorexia websites, but the site administrators and bloggers have remained resilient.
"They use the blogs to look for support and understanding, but at the same time, the content they display is something that for us -- people who are not sick -- is very disturbing," she said. "Studies show that people with eating disorders are stigmatized. Therefore these bloggers are looking for a place to vent out and express themselves without judgment of others."
Yeshua-Katz, the lead author on the paper, frequently researches how marginalized people are mediating their stigma through social media.
"The results revealed that the answers to why individuals are attracted to pro-ana sites have little to do with the need to share a broad philosophy or outlook and may stem from the desire simply to belong to a safe community of individuals with similar experiences," the researchers wrote in the study.
Their primary motivation for blogging was to seek social support. Most bloggers started publishing because they did not want to feel alone and were interested in finding others like themselves. They described interactions with family and friends as stressful "because they lack the understanding of their situation, while online they receive support constituted with sympathy, understanding and encouragement."
About half of the bloggers also said self-expression and the need to cope with social stigmas were other motives. When asked to give an example of how blogging might help them cope with stigma, six respondents answered that blogging offers them a different reality.
The majority of the sample reported that blogging about their illness improves their mood, and they found relief through their writing. The support they found was seen as unconditional.
"They receive encouragement when they post about their weight loss success and comfort in bloggers' comments when they fail in such efforts. Moreover, when a user wants to stop self-harm behavior or go into recovery, the community supports her choice too," the researchers explained.
"Our participants perceived the support within their ED community to be stronger than the support they received for their so-called strong ties to their offline life," they said, adding that eight bloggers reported meeting other community members in person.
In medical literature, a patient's decision to find support is seen as a good predictor of compliance and treatment leading to a cure.
Nearly 20 percent of the women interviewed for the study indicated that they were in the process of going through recovery from the illness. One respondent, who was in recovery, said that her blogging activities "gave her the skills to talk about her illness in the recovery process."
Of the 33 women interviewed, 27 defined their eating disorder as a mental illness and six said it was a coping mechanism. Contrary to previous research based on content analysis of the blogs, only three of those interviewed called anorexia a "lifestyle."
"In other words, people living with eating disorders are not purposely making unhealthy or health-compromising decisions. They are trying to find the best way they can to live with this disorder," the researchers wrote.
"I think that's encouraging that a majority don't look at it as a lifestyle," Martins said. "The silver lining is there that if they realize that it's a disease, then maybe they'll eventually seek help for it. But right now this is how they're coping."
While most studies make the claim that pro-ana websites promote and maintain anorexia by sharing tips for weight loss and concealing the disorder, only five bloggers mentioned this as a reason to start their blogs.
"Participants in this research, except for shutting down their blogs, did actively engage in ways to warn their audience about the content and ignored or blocked requests for tips and tricks from what they nicknamed 'wannarexics' -- young teenagers who want to become anorexic," the paper said.
Yeshua-Katz and Martins hope their research provides the medical community with greater understanding of the people they are treating. One of the bloggers they spoke to expressed difficulty finding "recovery" blogs and still follows the pro-ana blogs because "it's hard to totally abandon them."
"For example, they were missing a 24-hour support place," Yeshua-Katz said. "We need to see what about (the pro-ana blogs) is drawing people into the community and design blogs for recovery that offer the same kind of useful information so the recovery will work.
"By knowing what they're doing in those blogs, we might be able to find better ways to provide online support," she added.
The paper also highlights a major paradox for the pro-ana community. "They go online to vent out and to relieve stress. But then by having their blog, by having their secret life, it adds another level of stress to their life," Yeshua-Katz said. "There is an information game going on, and it's very intense and stressful because your stigma is unknown."
Ten of the pro-ana bloggers actually produce two blogs -- a "healthy" one for family members and friends and another about their eating disorders.
"The fact that disordered eating is such a solitary and isolating experience makes the Internet an ideal place for offering support and advice," the researchers wrote. "The pro-ana community is worth studying in its own right as a social space that affords a style of interaction that would be highly unlikely to be visible in the offline or pre-Internet environment."