COVID long haulers are sharing their realities on TikTok

Beth Ann Pardo ran her 13th ultramarathon in October 2019. The insurance director ran to keep fit and as a hobby to cleanse her mind from long days working in Guelph in Ontario, Canada.

Pardo was married in February 2020. She came back from her honeymoon in March and went to a local grocery store on March 24. Shortly after her visit, she received a notification from the store telling her she had come into contact with an employee who had subsequently tested positive for COVID.

Pardo started experiencing symptoms on April 2. But like a number of people, Pardo didn’t just shake off the illness caused by the novel coronavirus. “I was in bed for 17 days, pretty much unable to walk, the scariest sickest I’ve ever been,” she says. Her local public health authority was out of tests. Her hospital told her to stay home and not move unless she was gasping for air.

Pardo didn’t need to go to the hospital, but she has had a fever every day for the last 26 months. She no longer runs races: Staying alive is enough of a marathon for the 45-year-old.

Pardo is one of the many people who have what’s known as long COVID, in which symptoms persist months or years after exposure to the virus. The Centers for Disease Control estimates that one-in-five adults have a health condition that might be related to a previous COVID-19 illness. Long COVID is increasingly seen as one of the biggest risks related to a disease that’s already known to have killed at least six million worldwide.

Doctors are still trying to figure out how to treat long COVID, never mind figuring out why it only seems to affect some patients or what it even is. As with most things to do with the novel coronavirus, experts have plenty of questions — and precious few answers.

“I live about 20 percent of the life I used to live,” Pardo says. “If I leave the house, I end up in bed for a day or two.” It is a solitary, frustrating existence. Which is why Pardo treasures the long COVID community of TikTok.

“I didn’t want to deal with all those negative comments downplaying the virus and how sick I am, and calling me lazy.”

Pardo first logged onto TikTok in March 2020 in order to find a diversion when she first got sick. She was far from the only one: People worldwide spent as much time on TikTok in March 2020 alone as there has been time between now and the Stone Age. In the beginning, she was watching dance and comedy videos. It was early enough that long COVID wasn’t a thing yet.

But it has since grown to be a significant part of TikTok. Videos tagged with #longhauler have more than 43 million views on the app. #Longcovid is even more popular, with 163 million views. Both hashtags are littered with people sharing their personal experiences of going from leading healthy lives to ones that are perhaps permanently altered.

Pardo switched from being a video watcher to a content creator in October 2021 after former Full House actor Candace Cameron Bure posted antivaccine sentiment on her Instagram feed. “That’s when I first shared my story,” says Pardo. “Listen: I was an ultramarathoner, and this was my immune system, and how it let me down.” Her first TikTok video on long COVID struck a chord with many; it has been viewed more than 13,000 times.

Pardo’s account, @longcovidlife, is now followed by more than 50,000 people, who watch her regular updates of what life is like on the road to recovery. One of her most popular videos, summarizing her history of long COVID, has been seen more than a million times on the app. And she’s one of the many active members of the long COVID TikTok community.

Another community member is Georgia lawyer Erica Taylor. The 33-year-old contracted COVID in mid-June 2020, realizing something was up when she had stomach issues and what felt like a sinus infection. A day or so after testing positive, she developed a fever, then felt exhausted and confused.

She stayed sick for weeks, finally getting better around the July 4th holiday. But it was only a brief respite: 48 hours later, the fever returned, and stuck around until month’s end. She blacked out twice while sick, and felt like her mind was full of static and white noise. “At one point I wondered what my name was,” she says. “I remember thinking to myself, Something wrong just happened, but I don’t know what, and I don’t know what to do about it. I got totally scared.”

That came alongside odd spikes in her blood pressure, pain in her legs, and a crushing feeling in her chest. Doctors discovered that she had pneumonia and a blood clot in her leg. Taylor began blogging and posting to Facebook, describing her symptoms and challenging disinformation she saw online. Eventually she got too tired from chronic fatigue syndrome to write, so she started documenting her illness through videos on TikTok.

“If you’re not a mutual follow, all you can see are my lawyer videos,” she says. “But if you’re someone I follow and you follow me, you see all my COVID videos.” That choice is deliberate: “It was a move to protect myself. I didn’t want to deal with all those negative comments downplaying the virus and how sick I am, and calling me lazy.”

Battling misinfo

Not all members of the community have had COVID. Paul Lombard, a 54-year-old who lives in Maryland, hosts a weekly livestream on TikTok debunking disinformation and interviewing long haulers about their stories.

Lombard’s day job is as a contractor working with the National Institutes of Health, editing and posting COVID content onto their site. “While I’m not a doctor or a scientist, and I’ve never claimed to be, I have access to a lot of information on the subject,” he says. He felt compelled to start posting on TikTok in response to the rampant amount of misinformation that was distributed on the platform in the early stages of the pandemic.

He’s since witnessed things change for the better, with long haulers taken more seriously — and connecting with each other for support. “I’ve seen individual creators start to talk about their stories, and they tend to come together, stitching or commenting on each other’s videos,” Lombard says. Pardo helps run a virtual weekly support group on TikTok Live for those struggling with long COVID, though she goes through phases of stepping back from it for the sake of her own health.

That sharing — and knowing that you’re not alone in the experiences you face — is what keeps folks like Pardo going. “It’s therapeutic for me to document and share the progression of my symptoms,” she says. “But most of why I do it is I have people message me on the side saying they’re lost and don’t even know where to start with their GP [general practitioner].” Sometimes, Pardo says, physicians treating long COVID patients are just as lost as their patients because of the relative newness of the problem.

Just like any online creator, long haulers have to take negative comments alongside supportive ones — an issue compounded by the controversy around COVID, which some people believe, despite the vast number of deaths, isn’t real. “Those who do attack generally aren’t attacking me,” says Pardo. “They’re attacking what they consider to be leftist agendas regarding COVID.”

“Just to talk to people who understand [long COVID] fills a gap in my heart that can’t be filled in other places.”

Still, she’s often called lazy by commenters who insist COVID isn’t real. “I used to get up at 4:30 every morning to work out and then run 25 kilometers,” says Pardo. “I am dying to get back to my old life. I’m the furthest thing from lazy.” It can be hard not to take such comments personally, but she’s often willing to engage with skeptics, provided they are willing to have a rational discussion about it.

TikTok — with its ability to broadcast to millions — is a double-edged sword, says Lombard. “I feel like TikTok is kind of the best of humanity and the worst of humanity in one form,” he says. “It’s where people can come forward — and they may be vulnerable — to share something difficult and painful, and people will be supportive and receptive to that. Then you’ve got the other side that’s just dismissive, insulting, or rude.”

Still, Lombard sees more good than evil: “The good side tend to out-talk or stand up to the resistance, and get a chance to have their message heard.”

Pardo, for one, is thankful she gets to have her message heard on TikTok. “I’m eternally grateful for it, because it normalizes it,” says Pardo. She frequently tells people in her family, or on the street, about her illness, but they can’t relate. “People have a really hard time wrapping their head around chronic illness or chronic pain,” she says.

But online, with likeminded people going through the same experiences, that changes. “Just to talk to people who understand it,” Pardo says, “fills a gap in my heart that can’t be filled in other places.”