Social media, where users exchange information and photos and communities form over common interests, has become a bastion for some struggling with eating disorders.
(USA Today) WHITE PLAINS, N.Y. -- Donna, 27, refuses to have a Facebook or Instagram account. It's one way to protect herself. As someone who suffered from bulimia from age 12 to 25 and endured its agonizing effects — dental erosion, swollen glands, loss of her period and a half-dozen or so hospitalizations — her will to live is far greater than the allure of social media.
In high school, she took part in online discussion forums where people compared weights, binged together and helped one another avoid eating.
"I was affected by it," said Donna, of New Rochelle, who asked that her last name not be used. "Now, I don't like to compare. Facebook and Instagram are very image-driven, so I try to avoid that."
Social media, where users exchange information and photos and communities form over common interests, has become a bastion for some struggling with eating disorders. Images of spindly legs, concave stomachs and jutting ribs emerge on various sites by searching hashtags like #thinspogram #thighgap or #bonespo. The disturbing photos are often accompanied by even more shocking "thinspirational" messages — "Pretty girls don't eat," "Skip dinner, be thinner" and "You have to exercise for a week to work off the thigh fat from a single Snickers."
"Pro-ana" (pro-anorexia) and "pro-mia" (pro-bulimia) websites have existed since the inception of the Internet. But social media sites — Facebook, Twitter, Tumblr, Instagram and Pinterest — have given these communities a global platform on which to share ideas and photographs. Users support one another's self-destructive behaviors through shared tips and tricks — and promote the notion that an eating disorder is a lifestyle choice, not a serious mental illness.
Eating disorders — which include anorexia nervosa, bulimia nervosa and binge eating — are a complex set of illnesses caused by genetic, biological, behavioral, psychological and social factors. These disorders have the highest mortality rate of any psychiatric illness. Anorexia, in particular, has a mortality rate 12 times higher than any other cause of death in women ages 15 to 24, according to the National Institute of Mental Health.
"We live in a culture where eating disorders thrive because of the messages we're exposed to," said Claire Mysko, head of youth outreach for the National Eating Disorders Association, or NEDA. "Social media heightens that exposure."
Social media, she said, amplifies behaviors associated with eating disorders — obsessions, comparisons and competition — with a constant stream of imagery and camaraderie-building, and how easy it is to seek and gain approval.
Twitter users, for instance, can come together through monthly challenges that set limits on calorie intake and give workouts to follow. Some Instagram users seek likes to complete tasks, such as "1 like = 2 hours of fasting."
"Before you would do (the behavior) in isolation or with a classmate," Mysko said. "Now you can log on and see what thousands of people are doing. It changes the game."
An estimated 30 million Americans suffer from a clinically significant eating disorder (20 million women and 10 million men) at some time in their life, according to NEDA.
Hospitalizations for eating disorders have also increased. There were 29,533 hospital stays in 2008-2009 for patients with an eating disorder diagnosis, a study by the Agency for Healthcare Research & Quality showed, a 24 percent increase in a 10-year period.
A little more than a year ago, Rockland Jewish Family Services started an eating disorder treatment program offering individual, family and group therapies, support groups and educational workshops for schools and professionals.
The program was founded by Carla Sadik Blumenthal, a Nyack resident who retired from the New York State Psychiatric Institute, where she worked for 30 years in eating disorder treatment and research.
"Eating disorders used to just be a white, upper-middle-class illness," she said. "Now it crosses all cultures."
Christine Miraglia Knorr, who heads the Rockland program, said nowadays they are seeing younger girls, boys and women in midlife.
Knorr is well aware of the dangers social networks pose on this population, particularly when they feature photos and other images that can glorify thinness.
Participants in their treatment group, she said, encourage one another to stay away from social media and to use the Internet in safer ways.
A study conducted by the University of Haifa in 2011 showed that the more time teenage girls spend on Facebook, the higher their risk of developing negative body images and eating disorders. A more recent study released this year by researchers at Florida State University found a correlation between Facebook use and disordered eating.
"An eating disorder rarely occurs in a vacuum. A lot of times there's anxiety and depression," said Westchester therapist Jessica Kilbride, who runs an eating disorder support group in Sleepy Hollow. "Pro-ana sites can trigger anorexic behavior but it will never be the sole cause of a full-blown eating disorder."
Still, Kilbride stressed, parents, teachers and therapists need to be aware that this online community exists.
In recent years, social media sites have made attempts to censor content that encourages eating disorders and self-harm. Instagram, for example, banned certain hashtags and instituted new guidelines against self-harm images and accounts.
NEDA, Mysko explained, has worked with every social media platform to help weed out dangerous feeds. Clicking on certain hashtags, for example, will prompt advisory warnings and a link to the NEDA website.
The challenge is keeping on top of the content, Mysko said. Groups that promote eating disorders simply find other hashtags and ways to share information.
More recently, NEDA and other advocates have been upping their own presence on social media to promote their message. In 2011, NEDA launched Proud2BMe, an interactive website for teens and young adults to develop healthy attitudes about food, weight and body image.
Their work is making an impact. Last year, Benjamin O'Keefe, a Proud2BMe "teenage ambassador" who suffers from anorexia, led a successful online campaign to get Abercrombie & Fitch to carry plus sizes.
Individuals are also beginning to share their personal histories and photos of recovery on social media, using hashtags like #edrecovery, #edsoldier and #foodisfuel and posting images of their meals. NEDA also asks social media users to join the pro-recovery movement by sharing posts and using the hashtag #prorecovery.
Barbara Smolek, administrative manager at the Columbia and Weill Cornell Center for Eating Disorders, said the center has seen an increase in positive dialogue being shared on social media.
"Messages of hope and recovery, which are so important to share, are increasingly easy to find," Smolek said.
Clinicians caution, though, that social media users need to be careful about the online recovery communities from which they seek advice and to be selective about which they follow.
"You have to be a smart consumer," said Knorr. "It's very tough out there to find stuff that is not triggering, that's supportive and not harmful."