Joanna Kay says she first started skipping meals when she was 14. Her parents were going through a divorce and they weren’t really easy to talk to. But the internet was. When the family finally got AOL, Kay would go online, alone in her bedroom, for hours. She quickly discovered communities that taught her how to be anorexic, to hide food from her parents, to purge. It was the early 2000s and people with eating disorders were gathering to share weight-loss tips on Myspace, Livejournal, and Xanga.
“When I went on these sites I saw things like girls posting their highest and lowest weights, how many calories they’re eating a day, how many times they ran around the block to burn the apple the ate. It would spur me to say, ‘If these girls can do it, then I can do it just as well if not better. I can lose even more weight. I am going to eat even less,'” says Kay.
We all know that the internet can be a dark place. People can be cruel to each other; they can band together in subcultures where dangerous behavior is accepted, encouraged, and normalized.
The eating disorder community is one of those places. Since the beginning of the internet, people suffering from anorexia, bulimia and all kinds of eating disorders, have come together to support each other and give each other inspiration—or #thinspiration as the latest movement is called—to keep going and stay focused on the goal of controlling their bodies.
An estimated 11 million Americans suffer from eating disorders, and anorexia has the highest mortality rate of any psychiatric illness. Back before social media, when someone on a pro-anorexia or pro-bulimia website became ill or died (I heard stories ranging osteoporosis to suicide), some members would be shocked enough to seek recovery—to quit the internet and their eating disorder. Then, you could still avoid digital media—and pro-eating disorder websites—if you tried hard enough.
Kay made friends and found a real-life community when she went to college. She even decided to stop restricting her food and going online. She gained a few pounds and felt better. But one day, she got tempted and did an internet search. To her dismay, she found pro-eating disorder communities had morphed with Instagram, Pinterest, Tumblr and the likes, and grown. “I realized this whole community had exploded on all these different sites and now there are pictures and links and all different rabbit holes to go down. I knew that this was not good for me but it just drew me in,” Kay says.
One Pinterest photo of an arm the width of a garden hose would have Kay thinking about her weight all day. She slid back into anorexia.
In 2014, if you are trying to recover from an eating disorder, temptation is just a tweet or Instagram away. And when a single picture of boney arm or a post about a celebrity who weigh less than 100 pounds can mess with your head, it’s not just the internet that’s a dangerous place. It’s your whole world.
Lawmakers in Italy recently proposed a bill that would fine and even jail people who create pro-eating disorder websites. In the US, if you search for “thinspiration” on sites like Tumblr, Pinterest, or Instagram, a warning box pops up, directing you to The National Eating Disorders Association. Several social media sites have guidelines that prohibit content that promotes or “glorifies self harm.” Users are banned from tagging photos with certain eating-disorder codewords, but they get around restrictions easy. Instead of tagging a photo with #thinspo, they’ll use #th1nspo and it catches on quickly.
danah boyd, a researcher at Microsoft and fellow at Harvard’s Berkman Center for internet and society, says blocking code words or visible signs of psychological trouble is useless. “What we see online is that young people cry out for help. They make it very visible when they are struggling. We usually try to block the thing that is visible rather than use it as an opportunity to get at the underlying dynamics that are at play,” she explains.
boyd is calling for what she defines “digital street outreach:” “We have all of these notions of street outreach in physical cities. How do we do the same thing online? How do we create a community of people who are looking out for young people who are clearly in trouble, helping them individually, rather than assuming we can do it algorithmically,” she says.
For a lucky few, the internet can open a window to recovery that the real world often can’t. Surfing on the web one day Kay stumbled onto webinar being given by an activist who runs a well-known eating disorder treatment center. “She said you don’t have to be ready to recover, you just don’t have to want to spend one more day or one more hour or one more minute living like you are. And I just became a waterfall of tears,” says Kay.
She began looking at recovery websites and nutritionist blogs but in the end, she checked herself into a 40 day in-patient program.
Today, at 26, back at work and front of a computer, Kay finds the only way to stay on track is to keep a tab open with Twitter and communicate with her support network there all day long. “I’ll say ‘Don, I’m having a hard day and I could use a little positive word’ and he’ll come back and say something nice,” she says.
The help she found online inspired Kay to even start her own blog, middlegroundmusings, where she writes about that place between being anorexic and having recovered.
Kay only recently told her now-husband about her anorexia. They stuffed invitations to their wedding while she was in treatment. She still hasn’t broken the news to her parents but says that blogging is helping her prepare for that conversation: “I lost my voice for 12 years and this is the first time I have been able to talk back.”
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