In these posts, people share raw depictions of the reality of eating disorder recovery: before-and-after images, pictures of food or of themselves with food, even hospital photos. This approach stands in stark contrast to the way I dealt with my own adolescent anorexia, which was characterized by shame and subterfuge. I worked doggedly to hide my bony arms, to explain away my weekly appointments, my supervised lunch in the vice principal’s office, my absence from school when I landed in the ICU.
While secrecy added nothing to my recovery, I still wondered about the repercussions of publicizing this delicate and nonlinear process on a platform such as Instagram. And according to the experts I talked to, I was right to be concerned. “I don’t recommend that my patients start eating disorder recovery social media accounts during their recovery,” said Erin Parks, a clinical researcher and COO of Equip, a telehealth platform focused specifically on eating disorder treatment. “I personally think the risks outweigh the benefits, and I would not want to set my patients up for potential hardship.”
The negative effect of social media on body image has been well-documented. Research shows that social media use adds to body image concerns, and that the more time someone spends on social media, the higher their risk of developing eating issues or a full-blown eating disorder. These trends take on a particularly alarming cast when you consider that a survey by Pew Research found that 73 percent of 18-to-29-year-olds on Instagram say they visit the site every day and roughly half reported they do so several times per day.
The above, however, describes people being sucked into disordered eating by social media. The phenomenon I had noticed was, on its surface, the opposite: people attempting to use social media to pull themselves out of an eating disorder.
On Instagram alone, there are 4.2 million posts tagged with #EDRecovery, 2.6 million with #EatingDisorderRecovery and 2.2 million with #AnorexiaRecovery, to name some of the most common hashtags. While their contents vary, they tend to fall into certain predictable categories: images of food, body photos, inspirational quotes, selfies with confessional captions. The impact such content might have is unclear at this point. But it’s important to keep in mind that the very conditions that make social media conducive to recovery — its egalitarianism, its option for anonymity, its incubation of hyper-niche communities — also make it conducive to relapse. The potential upsides of publicly chronicling one’s recovery are compelling, research shows. One significant benefit is accountability — a core element of eating disorder treatment that’s become especially hard to come by during the pandemic. In a study of people who shared their recovery on social media, 83 percent of participants said the sense of accountability provided by their posts helped them stay on track.
There’s also the appeal of inspiring others, of making a meaningful contribution. “Sharing allows you to feel helpful, especially if you receive messages that your story made other people feel less alone,” Parks said.
Feeling less alone is a another big reason for sharing eating disorder recovery experiences; social accounts may be the only places that young people feel free to truly express their reality. Being able to do so is crucial for those with eating disorders, who are “quite desperate to be understood and move beyond their obsession with body image,” according to Gene Beresin, a psychiatrist and executive director of the Clay Center for Young Healthy Minds at Massachusetts General Hospital. “The account serves as a key way to open up without fear or shame. That is a gift.”
Certainly the therapeutic value of online communities can be great, and research shows that online support groups can help those with eating disorders move toward recovery. But social media isn’t exactly an online support group. The intention to support may be there, but it lacks the moderators that you’d find in an actual group therapy session — whether in-person or virtual — who can keep things from going off the rails.
While you can control what you share, Parks said, “you can’t control how other people react.” For example, if a post doesn’t get enough engagement, it could increase feelings of alienation, or even perpetuate the insidious eating disordered narrative of not being “sick enough.” And though trolls are always a danger online, Beresin noted that any sort of negative commentary can be particularly damaging to those with eating disorders, who are “exquisitely sensitive to rejection or devaluation.”
Then there are the risks posed by the algorithms themselves, which often don’t do well with nuance, sometimes lumping together eating disorder recovery content with weight loss or “wellness” content, or even pro-eating disorder posts. (I see this kind of contradictory mishmash on my own Discover page, which puts body acceptance posts beside infographics of “12 ZERO-Carb Foods.”) This can be triggering for those in recovery. One analysis of TikTok noted that #EDrecovery posts demonstrated the “increasingly blurred boundary between ED recovery and pro-ED content,” while another large review of social media observed that the effectiveness of social platforms in promoting recovery despite housing both recovery communities and those that encourage dangerous behaviors is “underexplored.”
Another pitfall of #EDrecovery accounts is how they present eating disorders to others. Because so many posts focus on the body, they can perpetuate the misconception that eating disorders are about vanity, or “born of a desire to appeal to the male gaze.” And since many of the people behind these accounts fit the description of the “typical” person with an eating disorder — a young, White, thin female — they can reinforce stereotypes about who gets these diseases, excluding others who are struggling but don’t find themselves reflected in the dominant narrative.
Whether social media can be helpful in recovery is up for debate; in fact, the experts I spoke with were divided on the question of whether they would recommend that their own patients create recovery accounts, even if they follow the best practices listed below. But heeding this advice, they said, would help make an account more helpful than harmful:
Be honest. “The ability to open up candidly and make struggles and failures as well as successes known is liberating and empowering,” Beresin said. “Posts should present where you are in your recovery, what helped, what didn’t and where you need to go.”
Shift the focus from the physical. “Those in recovery should recognize that the real change happens in their minds, not in something that can be captured by a photo,” Parks said, adding that she advises against posting before-and-after photos or any specific numbers around weight or size. Research backs up this advice; one study on selfies found that more “humanizing” self-portraits were associated with recovery, while those classified as “objectifying” correlated with disordered eating.
Engage in discussion. To tap into the community benefits of social media, users need to use the platform as a two-way street, connecting with others in the comments and messages. “The value of this communication is extremely helpful. It provides a kind of forum for two or more people to discuss the process of recovery,” Beresin said. This, however, means maintaining the line between helpful feedback and destructive trolling, the latter of which should be blocked.
Enlist help. Beresin highly recommends people only share their recovery journey with the support of a therapist, mentor or trusted family member who can help them process their interactions and provide emotional support when necessary.
Be intentional with your follows. Because the algorithm doesn’t always get it right, it’s important for anyone in recovery to be diligent about unfollowing or blocking triggering accounts. “There’s a straightforward test here,” Parks said. “You can ask yourself, ‘Would I recommend that my best friend, who’s also in recovery, follow this account?’ If the answer is no, you probably shouldn’t follow it either.”
Social media might leave you feeling worse, and taking this risk may be unwise for people walking the fragile bridge of eating disorder recovery. Yet, as Beresin said, “narratives are fundamentally important in [the recovery] process,” and in our world today, social media is the primary place where we craft and share our own narratives. For those recovering from eating disorders doing so can be very powerful, but it requires attention and commitment, for their sake and for others’.
Kate Willsky is a freelance writer based in Sacramento who covers mental and physical health, among other topics. Find her on Twitter and Instagram @katek8katek8.
Perspective | Sharing your eating disorder recovery online can be risky, experts say. Follow this advice. - The Washington Post
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