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Inside Facebook’s Underground COVID Support Network

For many young coronavirus survivors — fighting lingering symptoms, denied proper care and aching for answers — these private groups are the only place to turn

When Mike, a 24-year-old dock hand from Myrtle Beach, tested positive for COVID on July 5th, he thought being young and healthy would spare him from anything more than mild cold symptoms. But five weeks later, he started to experience blurred vision while driving. He pulled over and realized he was having a full-blown panic attack. Afterward, he tried to shrug it off as an isolated incident and go about his life. “Then it happened again and everything went downhill,” Mike tells me. He became light-headed often, fatigued easily and frequently experienced hot flashes and muscle spasms. “I never had anxiety before, but that went through the roof,” he says.

Mike’s doctor prescribed hydroxyzine and citalopram to treat his anxiety, along with a multivitamin, which gave him some relief. But he was certain that his symptoms were a result of the virus. And so, he looked to social media to crowdsource medical advice. He thought about posting on his own Facebook timeline, but after not taking the virus seriously initially and having many friends and family members who were still virus-deniers, he was too embarrassed to admit to getting sick. Instead, he turned to Covid-19 Support, a private Facebook group of 1,800 people who have been affected by the coronavirus and want to share notes, all in an attempt to help each other out.  

“The responses were really helpful,” Mike says, particularly those about the lasting effects of the virus he didn’t notice at first. Most notably, Mike had an eye exam in March and got glasses for the first time in his life. On a tip from a post in the group, though, he went back to get his eyes checked again in September after recovering from coronavirus. His optometrist was shocked, but Mike’s vision did in fact get worse. Although COVID can cause enlarged red blood vessels, swollen eyelids, excessive watering and increased discharge in the eyes — and anxiety has been linked to blurred vision — there’s not a simple explanation for why his prescription would get worse in such a short period of time. Still, he appreciated the insight of someone in a similar situation. “It’s good to know I’m not alone in this,” Mike says. 

His positive experience with the Covid-19 Support group is surprising for a couple of reasons: 1) Facebook has been hemorrhaging younger users for years; and 2) the platform is notorious for peddling misinformation. Yet it seems that the pandemic has inspired some young people to return — not for alt-right memes about #SavetheChildren Qanon conspiracy theories, but to find out if other people are having similarly awful experiences with COVID. “I don’t think young people use Facebook that much — at least no one I know does — but I’ve come back to it to make use of the support of this group,” Amy, a 31-year-old editor in the U.K., tells me. 

She contracted an especially bad case of the virus back in March, and by April, her breathing was so worrisome she had to call an ambulance. The hospital, however, said her oxygen levels were stable enough to be sent home. Frustrated by doctors ignoring her persistent symptoms, she vented on Twitter, and one of her followers redirected her to the Long COVID Support Group, another private Facebook group for those who have had coronavirus (its membership is around 22,000, most of whom are in the U.K.). “Everyone in the group has had symptoms that have lasted more than three weeks, and most for many months now,” she says. “I still often have to spend days in bed due to breathlessness, chest pain, dizziness and fatigue.”

The group is campaigning for something called “long COVID” to become an official diagnosis. The term gained some legitimacy from an article in the September issue of the British Medical Journal, but until recently, it’s been largely unrecognized by the medical community. BMJ’s panel of experts describe long COVID as any form of coronavirus where symptoms like cough, breathlessness, muscle and body aches, chest pressure, skin rashes, palpitations, fever, headache, diarrhea and profound, inescapable fatigue last longer than two weeks. 

“A very common feature is the relapsing, remitting nature of the illness, where you feel as though you’ve recovered, then it hits you back,” explains Nisreen Alwan, an associate professor in public health at the University of Southampton and a survivor of long COVID. “It’s a constant cycle of disappointment — not just to you, but the people around you, who really want you to recover.”

Amy is now a moderator of Long Covid Support Group, and she and her fellow moderators make it very clear to members that any attempt to spread misinformation and/or trolling will be met with prompt removal. “We volunteer around the clock to make sure any upsetting posts or comments are removed ASAP,” Amy tells me, noting that racist posts about China engineering the virus, false claims about hydroxychloroquine and anything equating COVID to the flu have been deleted, as well as more subtle claims that authorities like the American Medical Association have inflated death toll figures. “We share relevant media articles and research studies to help the members of the group, and we take a hard line against conspiracy theories and pseudoscience,” she continues.

Larissa, a 47-year-old therapist, volunteers as a moderator for a similar Facebook COVID group, which also has about 20,000 members. (Out of concern for the privacy of its members, she didn’t want to disclose its name.) She joined after she contracted COVID in April at the long-term care facility where she worked. The person who gave her the virus died the day after Larissa received her positive test result. “This sent me into feelings of dread and fear — crying and sobbing,” Larissa says. At the same time, she was getting sicker. She lost her sense of taste and smell, felt dizzy and confused, heard strange ringing in her ear and experienced extreme thirst and panic, followed by exhaustion. “I read too many articles about healthy people who suddenly died after losing their sense of smell,” she says. 

To make matters worse, she was too scared to tell her family and friends she had COVID out of fear of being vilified or stigmatized, so she sought out the Facebook group instead. “It helped me feel less isolated,” Larissa explains. “Watching people on TV argue about wearing masks, closing things down and saying it’s a political hoax is really draining when you’re laying on the couch reflecting on your life, wondering if you might die.”

In many ways, group members are engaging in a similar discourse as medical professionals, where they attempt to parse which of their symptoms are lingering effects of the virus itself, and which are due to the trauma of getting sick. For instance, PTSD and acute stress reactions can cause chest pains, breathing difficulties and blurred vision, while trauma and anxiety are known to cause extreme and prolonged fatigue. One recent study even linked the loss of taste and smell associated with the virus to anxiety. “Mental health issues are, in medical terms, a secondary adverse effect,” explains physician Ravi Dasan. “You’ve experienced a terrifying event which you were possibly dreading, and afterwards, you have a survivor complex: ‘Why me? Why was I worthy?’ COVID-19 is a complex virus, but its impact on society is more complicated.”

To Larissa, it doesn’t matter what exactly is causing prolonged symptoms. People like her are in a lot of pain, and it helps to have that pain validated. That said, the trauma she’s seen in the group tends to fall into a couple of categories: People who’ve lost loved ones to the virus; and people who’ve been shamed and shunned for getting sick — or worse — unknowingly passing the virus to others. On the latter count, group members will often share screenshots from their family accusing them of intentionally transmitting COVID (which is why, of course, they don’t feel comfortable posting on their main timeline). 

“The trauma of being sick and getting such hateful messages sticks with me,” Larissa says. “The virus is so contagious. Having it is bad enough, but to have your family member send hurtful messages during one of the lowest points of your life seems extra cruel.”

In that way, the groups have become their own kind of family. “I don’t have insurance and can’t afford to go back to the doctor, so the group has been 100 percent helpful,” says Lee, a 24-year-old pizza delivery guy in Atlanta who tested positive for the virus in mid-July and lost his smell and taste for over a month. As someone who has struggled with anxiety and depression in the past, Lee doesn’t suspect COVID has made his mental health any worse, but having a coronavirus recovery Facebook group to connect with has lessened the feeling of isolation. Today, he feels less like his experience was a figment of his imagination. 

Or as he puts it, “It feels really lonely to have COVID, especially when so many people think it’s fake.”

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