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The dangerous, immersive world of Eating Disorder Twitter

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Some users follow #edtwitter in need of help—but help is rarely what they find.

Sarah* was a junior in high school when she joined Twitter. She was there for the American Idol fandom, she says, but then one day, she noticed she was being followed by a thinspo account. She was intrigued. She followed back.

It didn’t take long for Sarah, who’d always had this nagging feeling that she was “huge,” to fall down a Twitter hole of similar posts. She saw people who were already starving themselves, sick and miserable, encouraging others to do the same. She watched as people tried out “weight loss” tips, which only made them sicker.  

Sarah knew all of this was unhealthy, or at least secret-worthy, but the advice and the photos of too-thin women had indeed inspired her—and to dangerous levels.

“In a matter of six months, I messed up my kidneys, became severely underweight, and was admitted to a hospital for people with psychological problems,” she says. She continues to be in recovery today.

What Sarah stumbled upon—and was triggered by—is a faction of ED Twitter, an umbrella term for tweets relating to eating disorders. Scrolling through the hashtag #edtwitter will reveal many young people documenting their recovery process and looking for support. However, interspersed between these messages is the darker side of this sub-Twitter—not only messages promoting anorexia and bulimia, but also users asking for help to become more dedicated to their eating disorders.

Many bios will include a current weight and a usually dangerously low goal weight. Some list mental health diagnoses, such as “bulimic|major depressive|anxiety|bpd|SH,” and often descriptions of being “fat” despite that clearly not being the case according to pictures they’ve posted.

Because it comprises many different hashtags and threads, it’s difficult to tell how big ED Twitter is at any given time. “Pro-ana” sites, websites that glorified eating disorders and allowed people to swap tips, were popular before the days of social media, so this corner of the internet looks like a natural, if terrifying, extension of them. But with the power to draw in susceptible young people, it’s hard to see ED Twitter as a place of empowerment, especially when the toxicity is so entrenched.

A vulnerable target audience

There are two especially striking aspects about the world of ED Twitter. The first is just how young so many of the users are. It’s not unusual for those tweeting—mostly, but not exclusively, women—to be in their teens, with many appearing younger than 16.

For 24-year-old Hannah*, her earliest experiences with ED Twitter came when she was still very young. When I was 14, I established an eating disorder called anorexia-nervosa,” she tells the Daily Dot. “When I was at my worst, at my lowest weight, there was hardly anything on my body, definitely not fat. I was a skeleton—at 5-foot-two, I weighed 82 pounds.”

She said during this time, a decade ago, ED Twitter was more helpful—or at least it had less of a stigma. “It was a safe place to complain about your body, for others to give tips or share advice without being labeled ‘pro-anorexia.’” When she went to recovery from her eating disorder, she left ED Twitter.

While sharing dangerous weight loss “tips” may not sound like the makings of a safe space, Hannah maintains that there are positive parts of ED Twitter—namely, the people that you can connect with. But she still worries what young people are exposing themselves to.

“Users spread photos, media, tips, advice, and even hurtful tweets to purposefully trigger and humiliate other users,” Hannah says. “The majority of their audiences are pre-teens and young adolescents that are easily susceptible to the content they provide. It’s disgusting behavior.”

Adding to the harm inflicted on an already-vulnerable community is the fact that many young people use different handles and fake names for their ED tweets as a way to keep their friends and family unaware they’re participating. The people who care about them most don’t even know they’re engaging in this triggering space that is hidden from the rest of their lives.

 

The risk is much greater than the reward

The Pandora’s box problem is the second striking thing about ED Twitter: You can’t seem to find genuine support or connect with people for recovery without unleashing a world of triggering and toxic posts. The two do not exist in separate spheres. Tweets that seem to be genuinely looking for recovery help, like “Image eating 3 healthy meals a day, exercising regularly and just loving yourself. Why is that too much to ask for?” fall in close proximity to “I need a pro ana coach who I is harsh and strict. I’m 16. I don’t want to send body checks,” and even “GIRLS WITH WITH AN ED ACCOUNT!! look out for this guy @XXXXXX he’s following mostly girls with ed accounts calling them thin and sexy and it’s fucking creepy block him & watch out for yourselves.”

Although many of the pro-eating disorder tweets are marked with hashtags like #proana, #anacoach, and #anabuddy, the majority share more general hashtags like #ana, #anorexia, #aed, and #bulimia. If you start to follow or explore a general hashtag for advice with recovery, it’s virtually impossible not to find pro-ED posts.

“Social media is tricky when pro-eating disorder and pro-recovery people are utilizing the same hashtags,” Dr. Karin R. Lawson, who was the clinical director at Oliver-Pyatt Centers in South Miami for five years before going into private practice, tells the Daily Dot. It creates an environment where you can quickly slip from one to the other. But, in some instances, Lawson argues that this can be a force for good.

“One of the interesting pieces to that is, while concerning pro-eating disorder hashtags may create more access to triggering material for those in recovery, the opposite is also true. Hopefully, those who are so entrenched (or want to be entrenched) in an illness, will also see messages and ideas that counter that drive.”

Hannah strives to be one of those people adding a supportive voice to ED Twitter. “At 24, I am now more aware than ever of the dangers of my eating disorder, and that eventually I may die from it,” she explains. “But I try my best to spread positivity and do whatever I can no matter how small or big the situation may be. I try to support everyone in the community. I get happiness out of making others feel better about themselves, or simply feel like they are there, they are important, and that there are people who care and will help them in any way they can.”

 

Don’t find hashtags—find a community

Hannah believes that it is up to the ED community to self-regulate and create a positive space. “As a community, we need to come together to fight the trolls, the promoters, and those that simply cause others harm,” she explains.

But that seems like a daunting undertaking—and a lot to put on the shoulders of eating disorder survivors. Recovering from an eating disorder can be a tortuous process, one that’s often full of setbacks, relapses, ambivalence, and a profound sense of isolation. Those in recovery shouldn’t have to constantly fight for safety on a public platform like Twitter, where anyone can poison community-building.

“When someone is in a much more stable place in their recovery, they may then decide to take on an advocacy role and become more engaged in promoting recovery themselves,” Lawson explains. “This, of course, can open them up to a whole host of challenges, including internet trolls. However, when a person can work to really create for themselves a nurturing pocket of the social media world, it can make such a difference in mindset and motivation for recovery-oriented choices.”

Lawson says, though, that to get to that point where those with eating disorders are strong enough to help others, they should first get off ED Twitter.

“For my clients working on their recovery, I don’t actually recommend that they follow hashtags, but rather cultivate a community of people who are known to be pro-recovery,” Lawson says. “I typically help my clients get started in creating a list of people and organizations that are going to be consistent, helpful, and inspirational in their work toward their eating disorder recovery.”

But Twitter is a long way from being able to regulate or separate the triggering tweets from the empowering. The Daily Dot reached out to Twitter about how or whether it regulates the ED community, and a spokesperson gave a standard statement regarding its rules:

“You may not promote or encourage suicide or self-harm. When we receive reports that a person is threatening suicide or self-harm, we may take a number of steps to assist them, such as reaching out to that person and providing resources such as contact information for our mental health partners.”

Twitter’s statement went on to include “eating disorders such as bulimia, anorexia, and serious illnesses that cause severe disturbances to a person’s eating behaviors” as examples of encouraging or promoting self-harm, and offered a link to report concerning material.

So while rules are technically in place, it’s not the most reassuring response for members of a group that would like to feel protected. For Sarah, who fell down a life-threatening spiral in just six months, the only solution is to stay as far away as possible.

For someone who has never seen any kind of ED Twitter, I would advise them to not even go there,” she says. “It will do one of two things: Make you feel bad for the people on there, or it will captivate you, and then next thing you know, you have a Twitter handle and you’re a part of the community… ED Twitter is nothing but heartbreak.”

*Names have been changed to protect their identity.

For more information about eating disorders or to speak with a someone confidentially, contact the National Eating Disorders Organization