Coronavirus Presents New Challenges For Those With Eating Disorders — Here’s How Survivors Are Seeking Out Support Online

Staying home to help prevent the spread of coronavirus has brought major life changes for many. For those who have been diagnosed with an eating disorder, social isolating can pose a serious risk to their recovery.

When U.S. health officials began recommending that people stay at home in March, Allison Caswell didn’t expect doing so would trigger old anxieties about food that she struggled with daily in the past. For one thing, Caswell, a 29-year-old in Wilmington, North Carolina, had been in recovery for her eating disorder for 12 years. For another, as a health care worker, she felt that she had a good understanding of the major lifestyle changes that would come with social distancing. However, a trip to pick up supplies at the grocery store ahead of social isolation set off familiar discomforting feelings for her.

“I didn’t really think it was going to be an issue,” Caswell says. “It didn’t happen until I started going to the grocery store and the foods that I find comfort and joy in were suddenly not there. The shelves would be empty and it kind of triggered the anxiety and this sense of fear of, ‘What is actually happening?’ I think eating disorders are about control and this is something that none of us have control over whatsoever.”

According to the National Eating Disorders Association (NEDA), at least 30 million people of all ages, genders and backgrounds, suffer from an eating disorder in the U.S. along with millions more who are undiagnosed. They’re now facing sobering new challenges when it comes to the new living conditions of a pandemic.

“Eating disorders are a serious public health issue,” says Claire Mysko, the CEO of NEDA. “These are life-threatening illnesses that affect millions of Americans and when it comes to this particular moment of time, there are many mental health implications.”

The British Journal of Psychiatry states that anorexia nervosa has one of the highest mortality rates of all mental illnesses and studies have shown that those with eating disorders are more likely to suffer from anxiety and depression. Now, with coronavirus disrupting routines and limiting social interaction, risks have increased for those who were already incredibly vulnerable.

Many are turning to the Internet for support and community during these uncertain times. For some, that can be effective, but for others, especially those in recovery, it can backfire. Staying at home and relying on connecting online can be a minefield of triggering content during an already tough time. Memes about diet culture, jokes about gaining the “COVID-15,” and a stream of at-home workout videos have abounded in social feeds since widespread social distancing started.

“It’s a double-edged sword,” says Katie Olaskiewicz, an account strategist recovering from ED in Ann Arbor, Michigan. “While that’s [the internet is] normally a place that I go to engage with a body positive community or people that are going through recovery and talk to body positive or health-at-every-size dieticians, a lot of what’s coming up in my feed now are people joking about how they’re not able to work out or they’re eating a lot of junk or saying ‘I’m going to get fat’—those kind of things. It’s really changed the way I engage with social media.”

In response, Olaskiewicz has curated a social feed filled with accounts geared toward recovery, and unfollowed accounts that are toxic or make jokes that would cause her to relapse. She’s also doing virtual therapy sessions and has a scheduled video call every night with her brother and two-year-old nephew, a ritual that she says “grounds” her and helps her set boundaries to care for herself.

“The uncertainty of the future can lead to more anxiety, which can fuel ED behaviors,” says Jennifer Rollin, an eating disorder therapist and a co-founder of The Eating Disorder Center, an ED recovery center in Rockville, Maryland. “There’s also a lot of memes and jokes going around about weight gain, which is exactly what’s exacerbating a lot of people’s ED fears. Coupled with constant access to food and gyms being closed, it’s the perfect storm for an ED moment.”

Add that to a major influx of time spent online, and you get a situation that can quickly take a negative turn if not monitored carefully.

“In general, this tends to be an anxious group of people, whether it’s anorexia, bulimia, or a binge-eating disorder,” says Dr. Walter Kaye, the founder and executive director of the University of California, San Diego’s Eating Disorder Research and Treatment Program. “They’re very sensitive to stress, uncertainty, and change, all the kinds of things that are going on right now with COVID-19, so it’s likely to exacerbate the problem for them.”

Continual talk about food during quarantine—like what kinds of food to stock up on, what kinds of food are “good” or “bad” to keep in the house, restaurants closing, and grocery stores selling out of stock—can escalate already fraught relationships with food for those with an eating disorder.

That’s also been the case for Ionah Scully, a doctoral student in indigenous epistemology and pedagogy at Syracuse University and professional dancer. The coronavirus outbreak brought underlying issues they’ve faced with systemic food scarcity and eating disorders to the forefront. Scully has struggled with an eating disorder for 30 years since they were diagnosed with ED at nine years old.

“For some of us who grew up with food shortages, as I did, it kind of brings back these other triggers for us that can really make it hard to feel OK about eating, to feel that I should eat, to feel that there’s something I can eat,” Scully says. “Especially when some of the foods that I find are safe aren’t available right now or how, with everything going on, things are just less affordable, so it’s out of my budget to buy things that I need that are healthy for me.”

And sometimes even being sequestered alone can cause old tensions and harmful habits to resurface.

“Isolation is huge for eating disorders,” says Alyssa McKeeman, an eating disorder therapist and the owner of Blue Ridge Psychotherapy in Clemson, South Carolina. “[Those with the disorder] kind of thrive on secrecy and being alone, so it’s really important to reach out to your friends and people that know about your recovery who would be supportive.”

McKeeman suggests that those with treatment teams or support systems should stay in close contact with those people right now even if it’s just online or over the phone. There are, she says, free or low-cost resources available online, like virtual therapy being offered by many therapists right now, or meal support, like the Instagram account @covid19eatingsupport, where therapists are available online 24/7 to virtually sit with people while they have a meal, to provide accountability and backing.

“I think a lot of the free online resources are good right now because they’re kind of like [the in-person] group therapy format,” says McKeeman. “You can connect with people having the same struggles as you.”

Other social-media support systems have emerged, like “Food Truce, Body Peace,” a Facebook group about intuitive eating started by Brooklyn-based life coaches Sami Main and Juliette Sakasegawa.

Virtual check-ins can provide some much-needed accountability. For Grace Woodward, an events and project coordinator who lives alone in Los Angeles, asking others, like her boyfriend, to check in with her has been key to making sure that she was caring for herself.

Keep up to date with our daily coronavirus newsletter by clicking here.

“I think when this all started it was really bad and chaotic—I was like, ‘I’m going to intermittent fast and and only get produce and really limit what I’m going to do, and I’m going to run everyday.’” says Woodward. “I went into this really hyper-planned scheduled thing and then obviously I couldn’t meet those demands because I was stressed and then I was hungry, and it’s just not sustainable to set up those rules for ourselves because then we break them and then we feel bad.”

For others, the pivot to mostly interacting online provided new ways to connect with others for support.

Christina Grasso and Ruthie Friedlander, co-founders of the eating disorder peer support network The Chain, have helped their community find support via a Discord channel, where members can chat using both text and voice messages to talk to one another in the many chat rooms within the channel. The community is a peer-led group, with Grasso and Friedlander creating new “rooms” as people voice their needs, which can provide support as needed. Both Grasso and Friedlander, however, reiterated that in the case of a medical emergency, users should contact a doctor or a crisis hotline.

For others, recovery is most effective when they can recognize when it’s time to log off. Caswell has taken the time and space to try new recipes with her husband; to plant a vegetable garden; and to write about her ED recovery. Molly Apfelroth, an art director working in the health industry who’s been in recovery for a year, has begun journaling daily and turning to mindful movement like yoga, as a way to connect with her body in a way that is gentle and kind.

“[An eating disorder is] not something that ever really gets fixed or leaves and I think that it’s important to remember that so that I don’t get as hard on myself if I do have a slip-up,” Apfelroth says. “I think it’s about being compassionate to yourself and being mindful of the way you’re talking to yourself. Especially right now, I live alone on top of everything else, so if you’re the only person that you have right now, then you need to talk to yourself the way you would talk to your best friend.”

Edie Stark, a therapist who specializes in eating disorders, echoed the importance of acknowledging the difficulties faced by those with an eating disorder or in recovery in the current situation; while it may be easy to minimize something like ED in light of the pandemic, it can cause plenty of harm in the long run.

“I know it can be really common to do ‘despair compare,’ as I call it, where you might be like, ‘Well, I’m safe and I have access to food and my struggle doesn’t matter’—and that’s one of the most harmful things that we can do to ourselves because there is no such thing as comparing pain,” Stark says. “Everybody’s struggles are real and your pain matters. Even if it’s different than someone else.”

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Helpline at 1-800-931-2237; in case of a crisis or emergency, text “NEDA” to 741741 for 24/7 support.

Please send any tips, leads, and stories to virus@time.com.