COVID long-haulers share their realities on TikTok

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

Pardo got married in February 2020. She returned 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 that she had come into contact with an employee who later tested positive for COVID.

Pardo began experiencing symptoms on April 2. But like a number of people, Pardo hasn’t just been able to shake off the illness caused by the novel coronavirus. “I was bedridden for 17 days, practically unable to walk, the most frightening illness I have ever experienced,” she says. His local public health authority had run out of tests. Her hospital told her to stay home and not move unless she was out of breath.

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

The Long Haul COVID Beth Ann PardoBeth Ann Pardo

Pardo is one of many people with what is 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 has a health condition that could be linked to a previous COVID-19 illness. Long COVID is increasingly seen as one of the biggest risks from a disease already known to have killed at least six million people worldwide.

Doctors are still trying to figure out how to treat long COVID, let alone figure 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 lots of questions — and few answers.

“I’m living about 20% 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’s a lonely and frustrating existence. That’s why Pardo treasures TikTok’s longstanding COVID community.

” I did not want OK with all these negative comments that minimize virus and as I am sick, and calls me lazy.”

Pardo first took to TikTok in March 2020 to find a diversion when she first fell ill. She was far from alone: ​​People around the world spent as much time on TikTok in March 2020 alone as there was time between now and the Stone Age. At first, she watched dance and comedy videos. It was early enough that long COVID wasn’t a thing yet.

But it has since become an important part of TikTok. Videos tagged with #longhauler have over 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 a healthy life to one that is possibly permanently impaired.

Pardo transitioned from a video watcher to a content creator in October 2021 after the former Full house Actress Candace Cameron Bure posted anti-vaccine sentiment on her Instagram feed. “That’s when I first shared my story,” says Pardo. “Listen: I was an ultramarathoner, and it was my immune system, and how it let me down.” His first long COVID TikTok video struck a chord with many; it has been viewed over 13,000 times.

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

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

She remained ill for weeks and finally recovered around the July 4 holiday. But it was only a brief respite: 48 hours later, the fever returned and remained until the end of the month. She passed 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 bad just happened, but I don’t know what, and I don’t know what to do about it. I was completely scared.

#Longcovid TikToker Erica TaylorErica Taylor

This was accompanied by strange spikes in his blood pressure, pain in his legs and a crushing feeling in his chest. Doctors found she had pneumonia and a blood clot in her leg. Taylor began blogging and posting on Facebook, describing her symptoms and challenging the misinformation she saw online. Eventually, she grew too tired of chronic fatigue syndrome to write, so she began documenting her illness through videos on TikTok.

“If you’re not mutually following, 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.” This choice is deliberate: “It was a maneuver to protect me. I didn’t want to deal with all these negative comments downplaying the virus and how sick I am, and calling me lazy.

Fight misinformation

Not everyone in the community has had COVID. Paul Lombard, a 54-year-old man who lives in Maryland, hosts a weekly livestream on TikTok debunking misinformation and interviewing long carriers about their stories.

Lombard’s day job is as a contractor working with the National Institutes of Health, editing and publishing COVID content on their site. “Even though I’m not a doctor or a scientist, and 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 being spread on the platform at the start of the pandemic.

He has since seen things change for the better, with long haul being taken more seriously – and connecting with each other for support. “I’ve seen individual creators start talking about their stories, and they tend to gather, stitch together, or comment on each other’s videos,” Lombard says. Pardo helps run a virtual weekly support group on TikTok Live for those battling long COVID, though she’s going through stages of withdrawal for the sake of her own health.

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

Like any online creator, long-haulers have to accept negative feedback alongside positive feedback — a problem compounded by the controversy around COVID, which some people say, despite the large death toll, isn’t real. “Those who attack usually don’t attack me,” Pardo said. “They are attacking what they see as left-wing agendas regarding COVID.”

“Just for talk to people who understand [long COVID] fills a void in my heart which cannot be fulfilled in other places.”

Yet she’s often called lazy by commentators who insist that COVID isn’t real. “I used to get up at 4:30 a.m. every morning to train, then I would run 25 kilometers,” says Pardo. “I’m dying to get back to my old life. I’m far from lazy. It can be hard not to take such comments personally, but she’s often willing to engage with doubters, as long as they agree. to have a rational discussion about it.

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

Still, Lombard sees more good than bad: “The good side tends to speak louder or stand up to resistance and have a chance to get its message heard.”

Pardo, for her part, is grateful to be able to get her message heard on TikTok. “I’m forever grateful to him because it normalizes him,” Pardo says. She frequently talks about her illness to family members or on the street, but they cannot identify themselves. “People have a really hard time understanding chronic disease or chronic pain,” she says.

But online, with like-minded people going through the same experiences, that’s changing. “Just talking to people who understand it,” Pardo says, “fills a void in my heart that can’t be filled anywhere else.”

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