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Not Pro-Ana: The Online Sisterhood of Eating Disorders

by Jaclyn Gallucci on December 1, 2010

MY BELOVED MONSTER

Amy, 18, a former moderator on a support site with 300 members—not a pro-ana site, she says adamantly—spent three years in what she calls “a dangerous, well-intentioned sisterhood that at one time felt like it was saving my life, but also prolonged my disorder and normalized it.”

She describes fights between members of different support sites and “mods” (short for “moderators”) arguing because one site would accuse the other of posting “tips” or was considered “too soft and flakey” or was considered too harsh and mean. Because of this, she says, her site eventually began screening members and making them go through an application and interviewing process. New members had to be formally accepted.

Since she has left, the site no longer accepts new members at all. Many current members wear red bracelets made of string so they can identify each other if they ever meet in public.

Amy recalls one time where a member 3,000 miles away said she was going to kill herself and then signed off the website.

“What are you supposed to do in that situation? We aren’t professionals and a lot of people who go to those boards sometimes need professional help.”

Amy contacted the owner of the site, who then contacted a local police department who then contacted a police department in the member’s country who then went to her home and found her alive and well.

“It’s hard because everything seems good and normal, and then one day this happens and you have someone else’s life in your hands and what do you do from the other side of a computer screen?”

Jessica, 25, has also left her support site after seven years. Jessica’s site had about 600 members from around the world. She says she felt like it was impossible to get better in a place where she was surrounded by so many people who were worse, so she had to end a lot of her friendships.

“I’ve flown across the country to be in one girl’s bridal party,” she says. “The love I had and that I still have for these people is very real. But as the years passed, I realized I was creating my own reality, and creating this new kind of ‘normal’ that wasn’t normal at all. My eating disorder wasn’t something weird about me, it was what made me fit [in], and I withdrew more and more from reality and my life. I would be at family gatherings on holidays and sneaking on the computer, I needed the site to get me through my day and all of my fears about what I would have to eat.”

Jessica describes a five-minute ritual she would perform every time she left the site, one of logging out, deleting cookies and history and auto completes from search engines, and the nightmares she would have of her parents finding out she was there.

“I think parents should be aware of what their kids are doing. I think the media needs to be aware of what it’s doing,” says Amy. “Because it was [a TV show] that introduced me to pro-ana sites, which then brought me to the support sites. It was a pretty actress, the glamour that drew me in at first. Not a sick girl. And then I found a place where I felt normal, when what I was doing wasn’t normal. And if I didn’t find that, if I didn’t find other people like me, I don’t think this would have gone as far as it did.”

In her final days on the site, Amy says she saw a picture posted by one of the members of a bulimic girl vomiting after a binge.

She was dead.

Her stomach tore open from the repeated purging, her body was purple and swollen with the food that leaked out of her stomach.

Her head was still in the toilet.

Back on Rachel’s site, there are people looking for her, asking if anyone has heard from her. Rachel had lost Internet access for a few days and couldn’t access the site.

One member writes that she is worried and wishes she could give all this up.

“It just makes me think ’cause my ED has wasted so much of my life but I can’t stop,” she says. “And even if I could push a button and make this all go away and be normal, I don’t know that I would.”

Under her profile picture she has written, “LW: 100 CW: 104 HW: 160 GW: 90,” meaning her low weight was 100 lbs., her current weight is 104, her high weight was 160 and her goal weight is 90. Many other members have the same abbreviations under their pictures, with varying numbers.

When regulars go missing for even a few days, it is cause for alarm. Members have died before.

“Occasionally the worst happens, but most times it’s because they get caught up in their everyday lives,” says PJ. “Sometimes it’s because they decide to recover.”

Two of PJ’s site members died of heart attacks brought on by their eating disorders in the past five years.
“Would that have happened with or without my site? Probably,” says PJ. “I want to say what I’m doing is helping because I do believe it is. I think we would hurt a lot more people by shutting down.”

PJ recalls one member who was hospitalized for having low electrolytes in her blood from purging, a condition that can cause cardiac arrest, telling her, “If only my heart was outside of my body, I would put it in a container, and I would take such good care of it.”

She says it’s not that her members are unaware of the dangers of their behavior, it’s that they can’t stop. And, at least here, she can give them an outlet for their emotions, and people who will listen and relate to them without passing judgment.

PJ has no intention of closing her site anytime soon, and even Jessica, who says she will never rejoin the community again, is unsure whether these support sites are helping those with eating disorders or hurting them.

“I think it helped me when I needed it most, but if I were to go back it would only hurt me, not intentionally, because those people are some of the best people I have ever met in my life,” says Jessica. “I’m not going to say being there is wrong or bad because I’ve been on both sides. And nothing is that black and white. I only know that it isn’t the right thing for me right now. And if I could meet these friends I’ve had for so many years in another time or place, it would be different. I wish it could be different.”

Part of Our Award-Winning Series Our Children’s Health

PAGES
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Long Island News, News, Our Children's Health, Special Series
Cover StoryDiagnostic and Statistical Manual of Mental Disorderseating disordersfeaturedmissedNational Eating Disorder AssociationOptenetOur Children's Healthsocial mediasocial networking
Cover Story, Diagnostic and Statistical Manual of Mental Disorders, eating disorders, featured, missed, National Eating Disorder Association, Optenet, Our Children's Health, social media, social networking
About the Author
Jaclyn Gallucci
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