Two years ago, when Madeleine Bowman began treatment for anorexia, she stopped looking at a pro-anorexia website that for years had served as her community and her source for ideas to nurture her secret illness.
But on Tuesday she was curious and decided to take a look. Fortunately, her login had expired.
Bowman 26, of New York, is in recovery from a decade-long battle with anorexia, she said.
She'd stumbled upon the website in eighth grade, after googling "eating disorders." Bowman had been skipping meals to lose weight and she wanted to find out if she was anorexic. She then visited the site often to find new ways to hide her condition from friends and family.
Given the many social aggregators that spread information to wider and wider audiences, Bowman says that today it would be even easier for someone to find their way to a pro-anorexia site.
That might not be the case for much longer. In March, social sites like Tumblr, Facebook, and Pinterest announced they will remove posts and website information that could promote eating disorders.
"We aim to sustain Tumblr as a place that facilitates awareness, support and recovery, and to remove only those blogs that cross the line into active promotion or glorification of self-harm," Tumblr's revised policy states.
This move is one of many efforts that signal a shift in how the public views eating disorders, according to Claire Mysko, project manager of Proud2BMe.org, a website that promotes awareness of eating disorders.
Mysko, who has worked in the field of eating disorders for more than a decade, said the stigma surrounding the disorder is decreasing. More people are willing to talk about their problem, and more are willing to speak up against the unhealthy behavior, she said.
"There aren't as many who are feeling that ashamed," said Mysko. "We're making progress in that area."
The shift in how eating disorders are viewed suggests that prevention and treatment efforts may be working. Hospitalizations for people with eating disorders dropped 23 percent between 2007 and 2008, according to the latest findings from the Agency for Healthcare Research and Quality. This decline was the first ever noted by the federal agency since it began tracking hospitalizations in 1999.
The drop, though, some experts say, may largely be due to the lack of insurance coverage on designated treatments for eating disorders, particularly hospitalizations.
As much as $5 to 6 billion per year is spent treating eating disorder patients in the U.S., with hospitalizations comprising only a small part of the total cost, according to the National Eating Disorders Association. In many cases, patients like Bowman must pay out-of-pocket.
Outpatient services and partial hospitalization programs are becoming more prevalent and accessible, according to Dr. Ovidio Bermudez, chief medical officer of the Eating Disorder Recovery Center in Denver, Colo.
The reason pro-eating disorder websites are so popular among patients, he says, is because they offer the opportunity for someone suffering from an eating disorder to immerse herself in an environment with other like-minded people, where they can learn new, damaging behaviors, Bermudez said.
"Contagion, comparison, and competition are part and parcel of the eating disorder way of living," said Bermudez.
Group therapies offer a substitute community, and are becoming more critical to treatment, he said. Family-based programs, too, have become a key ingredient for many recovering patients, offering reinforcement of healthy behaviors, he said.
Some experts say that heightened awareness about the disorder may be leading to lower hospitalization rates. Family members and physicians increasingly are looking for eating disorder symptoms. Awareness, in turn, may be helping to catch the disorder in its infancy more often, leading to earlier treatment, some experts said, eliminating the need for hospitalizations.
In fact, 78 percent of people believe they have enough information to know if someone were suffering from an eating disorder, according to a 2010 survey conducted by the National Eating Disorders Association.
Better identification of symptoms reflects a heightened awareness about the types of conditions, said Mysko. The survey also found that a majority now view eating disorders as a physical or mental condition, rather than just a lifestyle choice.
Still, as many as 11 million Americans have an eating disorder, 4 percent of whom die each year from the disease, according to the National Eating Disorder Association. Although the stigma has waned over the last decade, the number of people who have an eating disorder, and the number of people who die each year from the disorder remain consistent.
"We are actually seeing more complex cases," said Bermudez. These cases require more comprehensive treatment programs that should be approached with the same seriousness as patients who suffer from any other physically and mentally debilitating disease, he said.
But effective treatment means more than therapy and medical care, Mysko said. Removing societal pressures by limiting easy access to those promoting eating disorders can be a crucial part of treatment, she said.
"It's an illness that has physical symptoms, but it's also a complex psychological disorder," said Mysko.