How experts are helping people find the light at the end of the tunnel.

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By early 2020, Andrea Butler had "healed" her relationship with eating and was no longer restricting, binging, or purging. She was diagnosed with OSFED (Other Specified Feeding and Eating Disorder) in 2013, exhibiting behaviors associated with both bulimia and anorexia, but considered herself in recovery by the time COVID-19 turned all of our lives upside-down.

At the start of the pandemic, having moved back in with her parents at 26, Butler found her old anxiety around food resurfacing. "My life felt wildly out of control," she says. "My dad cooked dinner every day, and I found myself feeling so tense, knowing that someone else was preparing my meals and I couldn't control them. I felt this awful fluttering in my chest before and after every meal."

Butler is far from an isolated case. For those who struggle with diagnosed eating disorders and disordered eating habits, the pandemic has proved a perfect storm of triggering factors — worsening symptoms, accelerating diagnoses, and halting recovery. We knew early on that life under COVID-19 would put many people at greater risk for eating disorders. But today, during National Eating Disorders Awareness (#NEDAwareness) Week and almost a year since the novel coronavirus took over our daily lives, we have a clearer picture of how bad it really has been. And unfortunately, it's unlikely to let up post-pandemic.

The numbers are alarming

All the early research on eating disorders in the pandemic has more than confirmed the fears we had back in March 2020. "In the early months of the pandemic we saw a drastic increase (between 70-80%) in NEDA Helpline calls and click-to-chat messages," says Chelsea Kronengold, communications manager at the National Eating Disorders Association. "Almost a year into the pandemic, we have seen a steady 40% increase in helpline contact."

A study from June 2020, which surveyed individuals in the US and the Netherlands across the spectrum of eating disorders, found a stark increase in reported restriction and fears around food in participants with anorexia nervosa since the start of the pandemic. It also found that those with bulimia were more likely to binge-eat or feel the urge to. Though survey respondents tended to be young adults, they ranged in age from 16 to over 60, suggesting that worsening symptoms aren't limited to any one demographic.

There is little data out there about the impact of COVID-19 on eating disorders in communities of color, but we do know that generally "the BIPOC community is significantly less likely to receive help for their eating issues," Kronengold says. "Historically, people thought that only young, white, affluent thin women could have an eating disorder; yet stigma and misconceptions about who eating disorders affect have real consequences, leading to fewer diagnoses, treatment options, and pathways to help for those who don't fit the stereotype." So not only is it likely that eating disorders have been rife among people of color in the past year, but chances are that those people haven't reached out for help at the same rate as their white counterparts.

It will take months — even years — to form a full picture of how badly the pandemic has affected disordered eating, but other early studies show a similar trend. One August 2020 survey of 159 people with anorexia nervosa found that 70% of participants "reported that eating, shape and weight concerns, drive for physical activity, loneliness, sadness, and inner restlessness increased during the pandemic." A more recent study of 207 UK residents with self-reported eating disorders found that 83.1% of respondents were experiencing worsened symptoms, causing some psychiatrists to conclude that a 'tsunami' of pandemic eating disorders is still coming.

Though these studies are small, many of the experts we spoke to saw this happen in real time, as referrals to their practices spiked throughout the pandemic.

Why has it been so bad?

The past year has been disastrous for our collective mental health, as we've had to contend with more uncertainty than most of us have had to in our lifetimes. With uncertainty "comes increased anxiety and depression," says Casey Bonano, a Dallas-based certified eating disorders registered dietitian. "A large percentage of individuals with eating disorders also suffer from anxiety and depression. When anxiety and depression worsen, eating disorder symptoms worsen, and vice versa."

This rings true to Kirsty Batten, 24, who sees a therapist for depression and anxiety and was diagnosed with "mild bulimia symptoms" at the start of the pandemic. "There is a sense of impending doom," she says, and for her, "that feeling brings with it a carelessness and a disregard for health and rules and boundaries that make it so much easier to overstep the mark in so many ways."

In our new normal, those with eating disorders, or at risk of developing them, have been surrounded with potential triggers, says Jennifer Rollin, therapist and founder of The Eating Disorder Center. Think of "alone time, being around food (for some) more frequently, body changes during quarantine, not having access to the gym" combined with feeling constantly "out of control," she says. Or think of adults like Butler who have moved in with parents or a partner, and have had to adapt their eating habits around those of others. And that's without even touching on essential workers, homeschooling parents or the unemployed, whose extra stresses could be contributing to new or worsened eating disorders, as Lauren Muhlheim, Psy.D., author of When Your Teen Has an Eating Disorder, points out.

Think also of how the ubiquitous video call can affect those struggling with body dissatisfaction, and of how much time we're spending online right now. "Seeing oneself on screen all day can be challenging," Muhlheim says. "For some, there is relief at not being seen below the neck or in person at all. Neither is great. We usually aim for patients to find a middle ground between over-focus and avoidance — and this is harder to achieve in this setting."

We're also constantly scrolling through social media, "which is now more than ever filled with pro-eating disorders content, memes about not wanting to gain the so-called 'quarantine 15' and other triggering messaging and images for those experiencing eating disorders," according to Kronengold. "This harmful content likely originates on a variety of apps, especially those geared towards younger people; and once it goes viral, it makes its rounds on most, if not all, social media platforms."

Through all of these challenges, one factor has consistently made things worse: social isolation. "Eating disorders are diseases that thrive in isolation," Bonano says. Increased time alone with less support from family and friends, or having to reside with family members who may be triggering, are major factors contributing to worsened symptoms during the pandemic, she adds.

Will this continue post-pandemic?

Though of course some things will be easier once we're able to socialize again, there will also be a whole new layer of triggers as we move back towards a sense of normalcy: social pressure, comments or perceived judgment from others, trying on clothes not touched in months, and busier schedules allowing less time for self-care, for example.

And as many of us begin to see a light at the end of the tunnel, a predictable wave of "lose the quarantine weight!" messaging is making the rounds, which can be incredibly triggering. "People with disordered eating can't shield themselves from this, but they should seek support in learning how to challenge these messages and work towards body acceptance and standing up to diet culture," Muhlheim says.

In an effort to minimize the negative effects of this kind of messaging, as well as harmful memes and pro-ED content, NEDA has partnered with social media giants TikTok, Instagram, and Pinterest. "When users search for pro-eating disorders content on TikTok, for example, they'll receive a prompt to contact the NEDA Helpline, in addition to in-app tips for self-care and reaching out for support," Kronengold says.

Of course, the pandemic has been a massively traumatic event, and trauma doesn't just go away. "Residual trauma both from COVID and the trauma that BIPOC face regularly (and have also had to face a lot over the pandemic time period) will affect those at risk for eating disorders," Rollin says. Unfortunately, trauma and eating disorders are closely linked, and all four experts expect this new wave of EDs to continue once restrictions lift.

Some good has still come out of all this

For all the trickiness involved in taking everything online, it has also made eating disorder resources more accessible to many. "Overall, I feel there has been far more good that has come from virtual sessions than obstacles it has created," Bonano says. In fact, treatment centers are actually able to provide higher levels, and a far wider range, of care under a virtual model, she says. For example, those struggling now can take part in individual sessions, group therapy, and even meal support, where the clinician eats with the patient to guide them through any complicated feelings that arise, Bonano explains.

Although the sheer volume of people seeking out help for eating disorders is alarming, it doesn't only reflect worsening symptoms. It also shows that those who are struggling are finding a new willingness to get better. They have "more time to check in with themselves and notice any concerning behaviors — and more of a desire to finally address their eating disorder behaviors," Rollin says.

The experts remain cautious but hopeful for the future. "My hope post-pandemic is that people struggling with eating disorders will continue to reach out to seek treatment and support, and that re-engaging with friends, travel, and events can provide some motivation and increased social support to those in recovery," Rollin says.

There will be many challenges ahead, but with the right tools and enough self-compassion, things can get better. 

If you're struggling with disordered eating, NEDA has put together a list of free or low-cost COVID-19 resources, in addition to their confidential and toll-free National Eating Disorders helpline. You can also refer to their Black Lives Matter resources for additional support.