Eating Disorders: How An Online Community Could Lengthen the Road To Recovery

Posted at: 11/11/2012 8:03 PM
Updated at: 11/11/2012 10:31 PM
By: Naomi Pescovitz

More than 10 million Americans and 200 thousand Minnesotans suffer from an eating disorder. Statistics show the odds are 50-50 they will recover. But there is something happening online that could make that battle even tougher.

"All it really takes is to type into Google, pro eating disorder, pro anorexia, and you will literally get over millions of hits," said Heather Gallivan. Gallivan is a clinical psychologist and Program Director for the Park Nicollet Melrose Institute, a treatment center for eating disorders that offers outpatient, inpatient and residential care.

Most posters choose to be anonymous, some make up names. They get and give what is called "thinspiration" from behind a screen.

"This one is 'my hideous reflection' this one is 'losing 130,'" Gallivan said.

Gallivan says, nowadays, kids are busy and some parents are less aware.

"That might include what they're doing at school, at friends' homes, as well as we are seeing a larger component of social media playing a role in adolescents with eating disorders," Gallivan said.

"It's a big forum of crazy, and people feed on it," said 27 year old Asha Brown, who has recovered from her eating disorder but still sees all the sites and posts.

"If I was in a different place in my life, I would read that and I would compare myself to every single number that I see here," Brown said.

Several years ago, Asha sought treatment at the Melrose Institute.

"Type one diabetics are violently independent, they have to be," Brown said.

Brown had an eating disorder, most have never heard of: diabulimia.

"Type one diabetics are skipping their insulin in order to lose weight." Brown said.

Brown's diabulimia started in high school.

"This secret of finding a way to eat whatever I wanted and still remain very thin, I didn't want to give that up," Brown said.

Brown did give it up, but the online pro-eating disorder world can still act as a trigger.

"When I was looking at some of the things that people were posting, it kind of made me want to start planning out my dinner, and maybe thinking about planning out a couple of calories here and there, or having a second workout that day," Brown said.

Brown knows better. Her eating disorder caused chronic nerve pain and damage to her ovaries.

"It would be very difficult, if not impossible for me to have a child, to even carry it," Brown said.

That is the part of the story the forums leave out.

Brown has been healthy for four years now, happier than she had ever imagined.

"There's no life in this person, and there's a lot of life here," Brown said, while looking at a recent photograph of herself, compared to one while she was still battling diabulimia.

Asha is on the offense on the web. She has created a website called wearediabetes.org to give people with diabulimia support.

We reached out to both Tumblr and Twitter about the content on their sites, neither sent an official company statement.

We did find the following under Tumblr's list of Community Guidelines:

"Don't post content that actively promotes or glorifies self-harm. This includes content that urges or encourages readers to cut or injure themselves; embrace anorexia, bulimia, or other eating disorders; or commit suicide rather than, e.g., seeking counseling or treatment, or joining together in supportive conversation with those suffering or recovering from depression or other conditions. Dialogue about these behaviors is incredibly important and online communities can be extraordinarily helpful to people struggling with these difficult conditions. 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."