For months, she recreated the same photograph for her hundreds of Instagram followers every night. The same pale hand, grasping the same pastel blue plate, displaying the same five foods she’d eat for dinner – the only five foods left that her eating disorder hadn’t taken from her. Interspersed between bible quotes and silly selfies, Elise* documented on her Instagram account her 20-year battle with the binge eating disorder , which she’s struggled with since the age of six.
Elise had previously been hospitalized for her eating disorder but unable to recover. She credits the increasingly popular “pro-recovery” community on Instagram with finally giving her the push to enter professional treatment recently. Yet in a paradox echoed by other users, Elise believes the only way to fully recover may be to eventually give up the pro-recovery community.
“Pro-anorexia” websites that were particularly common in the early 2000’s have dominated much of the media coverage and public perception of eating disorder communities on social media. Though many still exist, growing awareness eventually led to a backlash, with official policies by platforms like Instagram developed to censor triggering content. Increasingly taking their place, a new wave of social media communities now aimed at supporting recovery from eating disorders, whether with professional help or all on their own. The Instagram hashtag “#edrecovery, just one of dozens that loosely link the community, can tally upwards of 40,000 posts on any given day.
“I think [social media communities] are an effective way for people to carry out changes and [stop] particularly unhealthy behavior…because of the positive reinforcement you get from other members of the same group,” says Joe Phua, a researcher at the University of Georgia.
Phua has studied how social media communities can help those attempting to abstain from unhealthy behaviors like cigarette smoking. His research has found that participation in online communities centered around abstaining from specific unhealthy behaviors lead to ‘higher self-efficacy’ and success. In findings he believes are relevant to the eating disorder community, it appears that social media communities may also reduce the rates and intensity of relapse into unhealthy behaviors after quitting.
Eventually killing between 5-10% of all sufferers, eating disorders have the highest mortality rate of any psychiatric illness. The high incidences of relapse among sufferers who were previously treated remains a dangerous reality for those across the full spectrum of eating disorders. Research shows relapse rates of 30-65% even after treatment.
Linda Buchanan, the director of the Atlanta Center for Eating Disorders, believes these high rates of relapse are actually the result of sufferers never receiving comprehensive treatment or ‘fully recovering’ in the first place. Eating disorder treatment is rarely covered by health insurance except in the most life-threatening cases. Often requiring a combination of treatments like cognitive-behavioral therapy, psychiatric medicine, nutritional counseling, lab monitoring and in-patient stays or hospitalizations, the medical costs can be prohibitively expensive.
Though eating disorders affect more sufferers in any given year than schizophrenia or breast cancer, they only receive 1/10th and 1/300th, respectively, of funding per individual from the National Institute of Health. Buchanan attributes this lack of funding in part to the social stigma that sufferers are to blame for their illness. The social stigma from the outside world is one of the driving forces behind sufferers seeking out these online eating disorder communities.
“The support I get is insane, ” says Rachel Worthing, 25, who uses Instagram under the handle Love My Middle.
Worthing relapsed into her eating disorder in her early 20’s after having been treated for anorexia at 13. This time, it manifested as orthorexia, a lesser-known illness defined by an obsession with perceived health foods and the elimination of other food groups. She says the media’s obsession with clean-eating can normalize disordered eating. Slowly, she spiraled from merely eliminating Coca-cola and artificial sweeteners to eventually being afraid to eat anything.
Already a few months into recovery, Worthing joined Instagram under the account name LoveMyMiddle. She quickly amassed a large following of 6,000+ members. She thinks her popularity stems from her honesty, in a sea of similar recovery accounts filled with inspiration quotes, she’d rather proudly post pictures of her cellulite and stretch marks.
Members like Elise and Worthing stress that watching others pursue recovery has encouraged their own recovery efforts. They believe that while still in the throes of their illness, or suffering relapses, venting online has been undoubtedly therapeutic. Yet they, along with eating disorder experts, caution that participating even in pro-recovery communities has the potential to be unhealthy and counterproductive.
Elise says she avoids hashtags like #fitspo (fit inspiration) that fall under the umbrella of the pro-recovery community but she believes still encourage an obsession with body image and food that often borders on orthorexia.
Both girls say they regularly have to unfollow pro-recovery accounts that begin posting triggering content seemingly overnight with no warning. Many members will relapse at some point in recovery, but unfortunately most don’t delete their accounts when this happened— rather they begin documenting their downward spiral to the very same followers who sought out the recovery community as a refuge. Worthing says she’s been surprised by the number of popular bloggers who will private message her obsessive questions about her weight, calories, or eating habits, clearly still in the throes of their disorder, yet all the while presenting an inspirational facade of successful recovery to their hundreds or thousands of followers. Experts caution that even in the best circumstances, Instagram’s eating disorder communities may present an unrealistic portrayal of what recovery looks like for an illness that is highly individualized and variant. Though the intentions of users may be good, Elise says the unfortunate paradox of the community is the tendency for users to use it as a crutch for far too long, simply flirting with recovery, when in fact they require intensive, professional treatment offline.
“You just get a bit absorbed with everything [online] [so that] you’re not really focusing on life. And I think the biggest key to really recovering is getting outside of yourself, and seeing that there’s a world, and people that love you,” Elise says. “There are things that matter beyond the amount of macronutrients you ate in your meal and how many calories you burned on your Fitbit.”
*No last name for purposes of anonymity.
