Illustrated By Ly Ngo.
“When someone writes, ‘My blood pressure is 70 over 45,’ the average person hears: ‘blood pressure, 70 over 45.' What I would hear was, ‘This person is sicker than me, and I need to be sicker,’” recalls grad student Marissa DeAnna, who used online social networks to help fuel her seven-year eating disorder.
Sound totally crazy? Well, this often typifies the rationale of the eating-disordered mind, where the ability to read information at face value is overshadowed by a compulsion to internalize and compare. While many of the first-generation pro-ana, pro-mia, and pro-recovery websites provided a strong community for girls with eating disorders, today's next generation sites have branched out across the web in smaller snippets via concave-body Instagrams, thinspo hashtags, and confessional Facebook posts. These now mirror the confusion of body-image messages in our culture as a whole, culminating in this dismal fact: An overwhelming 86% of National Eating Disorder Association’s general population survey respondents on its Proud2Bme site (aimed at teens and 20-somethings) feel social media has a negative effect on body image.
If, as a culture and general population, we're having an impossible time sorting through conflicting messages of sickness and health, desirability and undesirability when engaged in social media, then how on earth can the eating disordered find help online?
Illustrated By Ly Ngo.
A natural response to this isolating and stigmatized experience is found in pro-ana forums, next-generation social-media groups, Tumblr, and Instagram. Many are intended as welcoming places of acceptance and support, where the eating disordered can share challenges and struggles and gain a sense of community. And, while acceptance, whether for those deep in their sickness or in recovery, sounds both hopeful and helpful, in reality, the impact is just as muddled as in our weight-obsessed culture as a whole.
“There is a lot of stigma and isolation that people who struggle with eating disorders experience. With online groups, you have the benefit of connecting with others to get what you’re going through. You can understand the drive to seek out these communities,” says Claire Mysko, a spokesperson for the National Eating Disorder Association, who oversees the group’s site, Proud2Bme.
According to Mysko, one of the most profound contradictions lies in the mix pro-ana/pro-recovery messages found on many pro-ana sites. “You see an intense level of comparison in these posts and what people are saying about themselves and to each other. And all of this stuff is highly triggering,” she says. “There might be hints of support — sometimes you see things that are pro-recovery mixed in with highly triggering tips about how to stay in the eating disorder or how to hide the eating disorder from others. There are a lot of these contradictions, which is why I think it’s so important to provide a positive alternative.”
While many online pro-ana groups are well-intentioned in supporting those in sickness or health, it’s difficult to help someone on the road to recovery when posts come from a mix of those with eating disorders and those in recovery — even a seemingly innocent picture or weight can be a trigger. Because for many, just as body dysmorphia occurs when looking in the mirror, a sort of information dysmorphia occurs when they read fellow sufferers' posts.
“Even if someone is trying to be supportive and says, ‘You should try to get things under control because you’ve only had your eating disorder for two years and I’ve had mine for 10, and it’s really taken over my whole life,’ what I would interpret is, ‘Wow, she’s had it that long, she’s so much better at it than I am,’" says DeAnna. "When you’re sick, you don’t hear the same thing that a normal person would hear."
The reason? Mysko says, “What you're hearing and seeing is the voice of the eating disordered going through all kinds of judgments and comparisons...It’s dangerous and one of the biggest problems with these communities.”
Things that might signal alarm in healthy people, like pictures of protruding bones and meticulous logs of highest weight, lowest weight, current, next goal weight, and ultimate goal weight, can read more like a challenge for many disordered eaters.
“I think eating disorders are a very different illness from any other illness. Lots of illnesses have online communities that [can be your support system] if you don’t know someone in your everyday life that’s struggling with the same thing you are. But, most illnesses aren’t competitive,” DeAnna says. “And that’s the problem with eating disorders. It’s a very competitive illness. It’s trying to convince you you’re not doing it good enough. You always have to do better.”
Illustrated By Ly Ngo.
Sally, a moderator for pro-recovery group We Bite Back, agrees that running stats is a popular way for the eating disordered to stay sick while frequently triggering more disordered eating. “We will count anything: weight, calories, food portions or weight, body fat, BMI, hours spent at the gym, and more,” she says.
Information that’s presented on sites with pro-ana/pro-recovery messaging can inadvertently inspire those with eating disorders to sink deeper in their illnesses. Meanwhile, pro-recovery groups that don’t identify as pro-ana can also have the same effects.
While she perused pro-ana forums in the early aughts as a way to see “success” stories and motivate her not to eat, DeAnna never became too engrossed in those communities. She found much of the instructional content redundant. (“I already knew how not to eat,” she says), while other content were overwhelming triggers that made her feel unsuccessful in her disorder. “It was too blatant and upsetting to see all these other people who were sicker and thinner than I am,” DeAnna says.
Interestingly enough, DeAnna’s eventual involvement with online communities stemmed from her time in treatment, after a fellow patient started a Facebook group for girls who had attended the same facility. The group was geared toward keeping acquaintances from treatment in touch and supportive of each others' recoveries. Although, according to DeAnna, “Nobody who’s been to treatment with other people wants to trigger anyone else,” the group became a tool to further her disease instead of resist it.
“The Facebook groups were never really framed as being pro-ana. It was a pro-recovery group. And, I think people really believed it was pro-recovery. People would congratulate each other on doing well, so there was that piece of it,” DeAnna says. “But there was always an underlying ‘pro-ana-ish-ness’ to things. You see people's latest pics, status, you picked up all this information about how they’re doing when you never would have known otherwise. And, it’s instant competition at your fingertips.”
Participation in the Facebook group became compulsory for DeAnna. Just as she regimented what she ate, she got to the point where she routinely dedicated hours to her Facebook group every day.
Fittingly, research has long linked anorexia to personality traits like perfectionism, rigidity, and obsessive-compulsive tendencies. And, while DeAnna’s experience doesn’t represent every eating disordered person who seeks solace and support in online groups, there is something to be said for moderated groups that help suppress blatantly triggering information and steward the culture toward true acceptance.
We Bite Back, a pro-recovery site that started in 2006 as a supportive community with 24/7 access and after-treatment hours is one such group. Currently co-moderated by Sally, a woman with nearly five decades of personal experience as an anorexic, the site is careful to offer support in recovery by minimizing clear triggers without claiming to take the place of treatment.
“We try to help members learn to identify their triggers, why they trigger, and what skills can be learned to defuse them,” Sally says.
Illustrated By Ly Ngo.
The site contains concrete, skill-based forums and threads for things like managing anxiety, and bans skinny pics, graphic descriptions of maladaptive behaviors, and stats. It encourages members to seek or stay in treatment and work on body acceptance and fat-phobia issues.
Even with such mindful effort, Sally admits that the site isn’t totally free of trigger information. “I think any online community is going to be triggering for at least some members, some of the time. The same is true in inpatient and outpatient treatment settings as well. Put us in a room with others and we are vulnerable to triggers by people who seem thinner, needier, or more deserving than we are,” she says. “We Bite Back is a safe community for judgment-free acceptance and support, but we cannot and should not even attempt to provide a rarified kind of atmosphere free of the challenges we face many times in our daily lives.”
For its part, The National Eating Disorder Association (NEDA) is also working to provide an online place for the eating disordered to build community with minimized risk.
“People do get valuable use from that connection and being in a space where you don’t feel stigmatized. And, we don’t want to further the sense of stigma by saying the people who create or post the content are somehow bad. We recognize they are struggling,” Mysko says. “So, rather than advocating banning these communities, what we want to do is create an alternative space where people can get these positive benefits without being in a space where they feel exposed with a high level of triggering content and images...We’re trying to take the positive aspects of these communities and make sure they’re moderated in a way where they’re really and truly a safe space that promotes recovery and health.”
In its forums and Proud2BMe site for teens, NEDA sets community guidelines and uses trained moderators. This aspect is crucial for DeAnna. “Outside of a monitored community, being involved with other people online with eating disorders is never a good idea, in my experience,” she says.
It took DeAnna a year of inpatient treatment, where Facebook was forbidden, to help break her pattern of engaging other eating-disorder sufferers online. And, in part, by letting go of constant check-ins and comparisons with others, she was able to kick the disorder as a whole.
“I don’t really care if other people are going to be sick," she says. “I realized I wanted my life to be different and better.”