It is very difficult to determine how many pro–eating disorder, or pro–ED, websites exist on the web. A recent study from Children's Mercy Hospital and Clinics estimated that there are over 400 functioning pro–eating disorder, or pro-ED, websites; other studies put the number higher. Since their inception, not long after the internet's, such sites have proven controversial—while their writers may publish under the anonymity afforded by screen names and avatars, their thoughts are very public.
The central criticism—and justification for the censorship that drives the sites into more niche, hard-to-find online spaces—is that this sort of public expression can harm people trying to recover from eating disorders and promote unhealthy behavior. A 2010 study, published in the European Eating Disorders Review, revealed that after one-and-a-half hours spent on pro-ED sites, healthy college women with no history of eating disorders ate fewer calories the next week. In addition, some argue that pro-anorexia and pro-bulimia—or "pro-ana" and "pro-mia"—sites offer users a "social mirage" of support, community, and connection that they feel they lack in their everyday lives. In other words, users may both imagine they have a support system that isn't really there and be enabled by pro–ED messages from people they believe they should trust. But some believe the role the internet plays in eating disorders is much more ambiguous than the loud condemnation of pro-ED sites suggests.
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In 2001, a couple of months before an Oprah special reported on pro-ED sites, Yahoo! became the first server to attempt the removal of pro-anorexia websites, claiming these sites were in "violation of [their] terms of service." In 2008, France outlawed the positive portrayal of "extreme thinness in the media," and later, a member of parliament pushed for a bill that eliminated all pro-ana websites. Although the bill did not pass, it drew international attention. (More recently, France proposed a new law that states modeling agencies can be fined a max of $80,473.65 or six months in jail for employing excessively thin models.) In 2012, Instagram blocked and deleted all images tagged #proanorexia, #probulimia, #thinspo, and #thinspiration and made the tags unsearchable. Tumblr and Pinterest implemented disclaimers for hashtags that promoted eating disorders: #proana, #promia, #thinspo, #thinspiration, and #fitspo, to name a few. (Now, if you search unbanned but possibly harmful tags—like, simply, #anorexia—you get a similar disclaimer from Instagram.) Twitter does the least amount of policing, but will contact users if someone reports their "potentially suicidal" or "self-harming" thoughts. (None of the major social networks would return my emails requesting comments on this story.) Today, if you search a pro-ana-related hashtag on Tumblr you are met with the following message:
If you or someone you know is struggling with an eating disorder, NEDA is here to help: call 1–800–931–2237 or chat with them online. If you are experiencing any other type of crisis, consider talking confidentially with a volunteer trained in crisis intervention at imalive.org, or anonymously with a trained active listener from 7 Cups of Tea. And, if you could use some inspiration and comfort in your dashboard, go ahead and follow NEDA on Tumblr.
"I ate nothing but breathe mints for a summer and I was not any happier," says Jessie Kahnweiler, a Los Angeles–based actor and director of the upcoming dark-comedy series The Skinny, which is based on her own battles with bulimia. "It's an interesting moral quandary: Does Instagram have the right to monitor when people feel that is how they can express their disorder? [The Skinny] trailer got banned from a bunch of sites because they said it gave 'tips,' which was very interesting because I couldn't argue that. If something triggers you, it triggers you. I get that."
These so-called "tips" are often just representations of eating disordered behavior; the idea is, they might give users ideas. The reality. You've seen it on A&E's Intervention, when a woman stashed plastic bags of vomit in her closet to hide her illness from her husband. Or in the 1999 film Girl, Interrupted, when Brittany Murphy's character hides chicken carcasses under her bed to conceal her binges. Now there are endless sites devoted to footnoting tricks like "eat laxatives in rotating doses of 2, 4, 6, 8, so you do not become immune" or "use Doritos as a marker when you binge so that, when you later purge bright orange, you know you got all the food out." Given the breadth of content that could qualify, policing the net for "tips" is a dicey proposition. "You know how many 'tips' I got from Princess Diana Lifetime movies?" Kahlweiler says.
Statistically, cis women make up the highest proportion of people with admitted eating disorders. This includes unhealthy weight control behaviors such as skipping meals, fasting, smoking cigarettes, vomiting, and taking laxatives. Cis men make up almost 15 percent, and thanks to the efforts of social justice groups like TransFolx Fighting Eating Disorders (a Los Angeles organization that works to "make visible, interrupt, and undermine the disproportionately high incidence of eating disorders in trans and gender-diverse individuals through radical community healing, recovery institution reform, empowerment, and education"), such issues are gaining visibility in the LGBT community as well. However, what has not changed is that the ultimate aspirational image of thinness is almost always portrayed by a white female.
"The aspirational image of the white female is telling," says Caroline Rothstein, a New York-based pro-recovery spokesperson who beat her bulimia a decade ago. Rothstein writes and speaks regularly about recovery and recently helped get the fat emoji removed from Facebook. "I think that's so painfully and powerfully telling that these are the images folks are posting and that's not what they identify with. Self-fear and self-hate are their own version of discrimination."
"Visibility is crucial; it is the only way we will smash that pervasive and dangerous stereotype that eating disorders only happen to rich, white females," says Dagan VanDenmark, the co-founder of TransFolx Fighting Eating Disorders. TransFolx was born when VanDenmark's research for a thesis on trans identity and eating disorders revealed that not one intake professional even knew if their institution accepted or treated transgender people. "One of T-FFED's first viral images was a picture of five of us from the team, all trans-identified, holding signs that portrayed eating disorders as social justice issues and describing our other identities; especially as there is significant interest these days in trans narratives and 'inclusion,' we wanted to make sure our approach is always intersectional and constantly challenging our allies to see us as multi-dimensional."
The ultimate aspirational image of thinness is almost always portrayed by a white female.
"Our social media posts dismantle this public image by providing content that reminds our followers that EDs affect people of every background, especially the trans community, which has seldom been included when discussing EDs," adds Dan Maldonado, who works with VanDenmark at Transfolx. "White womanhood has always been lauded as the desirable standard in our society. So many atrocities have been committed in the name of protecting it, so it is no surprise to me that they have emerged as the face of this specific trend. I remember spending my early twenties perusing pro-ana and pro-mia sites looking for ways to lose weight, and next to images of Sienna Miller, Paris Hilton, and Mischa Barton were the toxic adages like, 'Nothing tastes as good as skinny feels.' Today I find it incredibly sad that leagues of folks of color, such as myself, invest so heavily in an unachievable standard."
"Most thinspo I come across has text that revolves around getting a boy's attention, or a boyfriend, by following some listed rules for restricting," says Ethan Lopez, another member of TFFED. "This perpetuates the harmful stereotype of EDs being a 'wealthy white girl's disease' and so people like me, a trans boy of color, aren't taken seriously by others when we talk about our stories."
For people of color and gender-diverse individuals, the fallacy that whatever you do not have at birth, you can change with the right amount of money, time, exercise, surgery, products, or clothes is doubly dangerous. It simultaneously implies the possibility of perfection and a clearly defined picture of what that perfection looks like (white, thin, female). "We are constantly told that we can choose our own bodies," writes Susan Bordo in her 1993 book Unbearable Weight. "The general tyranny of fashion—perpetual, elusive, and instructing the female body in pedagogy of personal inadequacy and lack—is a powerful discipline for the normalization of all women in this culture."
Since I could write, I have documented my life in journals and used them to figure out my bullshit. As a teenager and young adult, my journals were the only place I could really assess and express myself outside of the stifling social world, where I felt I always had to hit my mark. The internet has moved our private diaries into the public sphere: It's unavoidable that we write online now, that we have become conditioned to expect a public response to our private confessions. Ducking under anonymous handles, we imagine we're getting the best of both worlds: community, without consequences. How pissed would I have been if my teenage diaries were being policed as I was writing them? Besides, the only difference between a page from Karl Lagerfeld's lifestyle mantra featuring a Chanel-branded burger and fries next to his infamous statement, "Fashion is the healthiest motivation for losing weight" and a blog that details exactly how to starve is the format the two messages are packaged in.
The problem is how to reconcile the need to express ourselves with the harm those expressions might do others. "The public needs to understand that eating disorders are not about food," says Anne L. Wennerstrand, a Katonah psychotherapist who specializes in eating disorders. "The symptoms may look like a person being preoccupied with the body, but eating disorders are actually much, much more complicated than wanting to go on a diet or starving to try to achieve a desired appearance. [They're] about anxiety, depression, and other serious mental health issues."
Visibility is crucial; it is the only way we will smash that pervasive and dangerous stereotype that eating disorders only happen to rich, white females.
"[Social media] is really their world, much more than their family, especially for an adolescent," says Wennerstrand. "That's their second family. I'm very interested in that as a therapist. When I am getting to know a new [patient], we'll go online together and they'll show me their blog. That's a huge eye-opener for me, when somebody decides to let me see that side of them, because that's often where they're expressing a lot of pain and vulnerability."
Project Shapeshift: Proactive Pro-Ana is a website run by the Twitter handle @AnaGirlEmpath. At the top of the scrappy, amateur homepage reads the slogan, "Supporting those with restrictive ED's for over a decade - sans judgement." @AnaGirlEmpath also vlogs about censorship from her home of Colorado. Though she has recently turned her attention towards animal rights causes, her posts against censorship remain.
"When confronted with the silence-versus-tolerance dilemma," she writes on the homepage, "the majority of social networking platforms have responded by banning and censoring eating-disordered individuals who do not conform to the status quo: churning out conventional recovery rhetoric and ED-neutral platitudes are good and right; expressing yourself fully and openly is bad and wrong." As I watched @AnaGirlEmpath talk into the video camera on her phone (a tube planted in her nose, visibly, obviously anorexic), I wondered if social media might be the only place in her life where she felt did not have to monitor the thoughts in her head to please the people around her: parents, doctors, siblings, whoever. She did not have to pretend to be someone she was not and convince everyone she was "getting better." In her pro-ana community she could say the things no one wanted to hear. She could truly be herself in that moment.
In 2012, a controversial study conducted at Indiana University discovered that there may be benefits to online pro-ana communities. Researchers reached out to 300 bloggers in seven countries and received a ten percent response. Only women agreed to participate in the study, but both men and women were approached (an interesting finding itself). The study concluded that "the [pro-ana blogger's] writing activities provide a way to express themselves without judgment, which the authors believe can be crucial to their treatment."
In the study, most of the bloggers referred to their eating disorder as a "mental illness" or "coping mechanism." Almost 20 percent of the subjects said they were currently in recovery and that their online community and blogging "gave her the skills to talk about her illness in the recovery process."
"From the outside looking in, this looks like a really disturbing community," noted one of the researchers, "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. 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."
Many have noted that it is almost impossible to police and monitor all pro-ana activity online. Remove a hashtag and a new one will be created and spread within the hour, which is how Instagram users have gotten around the banning of #ProAna or #thinspo tags—add an extra n to "ana" or three o's to thinspo. When people need something, they find a way to get it.
Before, when you'd see models in magazines, there was no public conversation. Social media gives people a chance to really take their voices back.
According to another study conducted in 2013 by the BodySpace Society for Social Science, banning and policing these sites creates a "toothpaste effect": Censorship does not change the numbers, just the places the sites end up. The study revealed that the number of pro-ana websites captured using a web-mining tool (Navicrawler) in March 2010, before Pinterest and Tumblr announced their decision to ban all pro–eating disorder content, and March 2012, after the announcements, was virtually the same: 559 in 2010 versus 593 in 2012. Furthermore, some people argue that body-positive communities such as Endangered Bodies and TransFolx have a tougher time engaging with the bloggers and spreading their message of recovery. When organizations like the National Eating Disorder Association search pro-ED hashtags and infiltrate the communities with "positive messages," it feels to many sufferers like an "intervention" or an attack.
One blogger commented on the Tumblr ban saying, "It's still OK to have a racist blog on Tumblr. It's still OK to have a blog where you take pictures of people eating and call them fat. In essence, it's OK to have the kind of blog that causes someone to degenerate into the mental state where they might get an eating disorder, but once they get one we'll sweep them under the rug unless they only talk about their disease in a manner a bunch of bros unfamiliar with eating disorders find acceptable."
The writing activities provide a way to express themselves without judgment, which the authors believe can be crucial to their treatment.
"A million 'likes' is also capable of building a false sense of self-worth that is still relying on the outside and not the inside of the self," says Rohnstein. "So, you go on social media, liking a post and encouraging someone to starve themselves or you're liking a post to encourage someone to take care of themselves, but [regardless] we need to learn to rely on ourselves, not external forces."
"Having different levels of anonymity and accountability through social media can be very helpful, especially as one progresses in their recovery," says VanDenmark. "Even some of the pro-ana or pro-mia communities can be useful to bring people together to support one another, even if the original impetus to seek community isn't super healthy; practicing overcoming isolation can still transform into recovery and support-seeking behaviors."
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"I'm more honest on my Tumblr than I am in person," admits Diana Denza, a writer and social media expert who has struggled with her own eating disorder and volunteers her expertise with Endangered Bodies. "Social media is so interactive. Before, when you'd see models in magazines, there was no public conversation. That dialogue gives people a chance to really fight against the norm and to really take their voices back. That is empowering."