Beth Ann Pardo raced her 13th ultramarathon in October 2019. The Insurance Director raced to keep fit and as a hobby to clear her mind from the long days of work 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 telling her that she had come into contact with an employee who had subsequently tested positive for COVID.
Pardo started showing symptoms on April 2. But like many people, Pardo didn’t just shake off the disease caused by the new coronavirus. “I’ve been in bed for 17 days, practically unable to walk, the scariest I’ve ever had,” he says. His local public health authority was out of the test. 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 for the past 26 months he has had a fever every day. He no longer runs races: staying alive is enough for a marathon for the 45-year-old.
Pardo is one of the many people who have the so-called 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 related to a previous COVID-19 disease. The long-standing COVID is increasingly seen as one of the biggest risks associated with a disease that is already known to have killed at least six million people around the world.
Doctors are still trying to figure out how to treat the long COVID, no matter why it seems to only affect some patients or what it is. As with most things to do with the novel coronavirus, experts have many questions and few valuable answers.
“I live about 20 percent of the life I was living,” says Pardo. “If I leave the house, I end up in bed for a day or two.” It is a lonely and frustrating existence. That’s why Pardo treasures TikTok’s longstanding COVID community.
“I did not want to deal with all those negative comments that downplay the virus and how sick I am, and my name is lazy. “
Pardo first logged into TikTok in March 2020 to find a diversion when she first got sick. She was far from the only one: 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 COVID wasn’t a thing for long.
But it has since become a significant 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 moving from leading healthy lives to ones that are perhaps permanently altered.
Pardo went from being a video watcher to a content creator in October 2021 after the previous one Sold out Actress Candace Cameron Bure posted an anti-vaccine sentiment on her Instagram feed. “It was then that I shared my story for the first time,” says Pardo. “Listen: I was an ultramarathoner, and this was my immune system and how it let me down.” The first video of her TikTok on the long COVID impressed many; has been viewed over 13,000 times.
Pardo’s account, @longcovidlife, is now followed by over 50,000 people, who watch his regular updates on what life is like on the road to recovery. One of her most popular videos of her, which sums up her long COVID history, has been viewed more than a million times on the app. And he is one of many active members of the longstanding COVID TikTok community.
Another member of the community is Georgia attorney Erica Taylor. The 33-year-old contracted COVID in mid-June 2020, realizing that something was happening when she had stomach problems and what appeared to be a breast infection. A day or two after testing positive, she developed a fever, then she felt exhausted and confused.
She remained ill for weeks, only to recover during the 4th of July holidays. But it was only a brief respite: 48 hours later, her fever returned and she stayed until the end of the month. She passed out twice while she was sick and she felt like her mind was filled with 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 was completely scared ”.
This was accompanied by strange spikes in his blood pressure, pain in his legs and a squeezing sensation in his chest. Doctors found that 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. She eventually got too tired from chronic fatigue syndrome to write, so she started documenting her illness through videos on TikTok.
“If you’re not a common following, all you can see are my lawyer videos,” he says. “But if you are someone I follow and you follow me, you see all my COVID videos.” That choice is deliberate: “It was a move to protect me. I didn’t want to face all those negative comments that belittle the virus and how sick I am and call me lazy. “
Fighting wrong information
Not all members of the community have had COVID. Paul Lombard, a 54-year-old living in Maryland, hosts a weekly live stream on TikTok to debunk misinformation and interview longtime haulers about their stories.
Lombard’s day to day job is as a contractor working with the National Institutes of Health, editing and posting 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,” she says. He felt compelled to start posting on TikTok in response to the rampant amount of misinformation being distributed on the platform in the early stages of the pandemic.
It has since seen things change for the better, with long-haul transporters being taken more seriously and connecting with each other for support. “I’ve seen individual creators start talking about their stories and tend to get together, stitch or comment on each other’s videos,” says Lombard. Pardo helps run a virtual weekly support group on TikTok Live for those struggling with long-standing COVID, even as they go through phases of moving away from it for the sake of their own health.
That sharing – and knowing that you’re not alone in the experiences you go through – is what keeps people like Pardo going. “He is therapeutic for me to document and share the progression of my symptoms,” he says. “But most of the reason I do this is that I have people texting me sideways saying they are lost and don’t even know where to start with their GP [general practitioner]. ” Sometimes, Pardo says, doctors treating long-term COVID patients are lost as much as their patients due to the relative novelty of the problem.
Just like any online creator, long-haul travelers have to accept negative comments alongside supportive ones, a problem compounded by the COVID controversy, which some people believe, despite the vast number of deaths, is not real. “Those who attack are generally not attacking me,” says Pardo. “They are attacking what they consider leftist programs regarding COVID.”
“Just for speak to people who understand [long COVID] fills a gap in mine heart which cannot be compiled into another places. “
However, she is often referred to as lazy by commentators who insist that COVID is not real. “I would get up at 4:30 every morning to train and then run 25 kilometers,” says Pardo. “I can’t wait to go back to my old life. I’m the furthest thing from the lazy. It can be difficult not to take such comments personally, but she is often willing to interact with skeptics, as long as they are willing to have a rational discussion about it.
TikTok, with its ability to broadcast to millions of people, is a double-edged sword, says Lombard. “I feel that TikTok is the best of humanity and the worst of humanity in one form,” he says. “This is 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.
However, Lombard sees more good than bad: “The good side tends to speak out or resist resistance and have the ability to get their message heard.”
Pardo, for example, is grateful that her message is heard on TikTok. “I am eternally grateful for it, because it normalizes it,” Pardo says. She often tells people in her family, or on the street, about her illness, but they can’t relate. “People really have a hard time thinking about chronic disease or chronic pain,” she says.
But online, with like-minded people living the same experiences, things change. “Just talking to people who understand it,” says Pardo, “fills a void in my heart that can’t be filled in other places.”