PHILADELPHIA — As often as three times a day, Alexandra Hackett posts on her TikTok account, adding another video entry to her chronicle of a 20-month journey with long COVID-19.
Some are wry, such as the one showing her haunted by a computer-animated ghost as a metaphor for symptoms that continue her suffering long after the initial illness. Others are fiery. She has no tolerance for COVID-19 deniers or anti-vaxxers, and readily responds to trollish comments. In a few, the really raw ones, the 44-year-old Philadelphia woman seems both anguished and exasperated by a condition that saps her energy, plagues her with inexplicable fevers, and so far evades science’s efforts to understand or treat it.
In one video from October that drew 145,000 views, Hackett, crying, describes how much anger she has about her condition. Before catching COVID-19 in March 2020, she was a runner and active in CrossFit. Now, taking a walk can be draining.
“To go through the periods when you’re crying and frustrated, I don’t have a problem sharing that,” she said, “because it’s real. It’s true.”
Hackett is among thousands who have turned to social media as an outlet and source of information and camaraderie as they struggle with a set of syndromes that medical science is still working to understand. An Instagram search for longcovid returned almost 60,000 posts. Facebook hosts about two dozen different groups, each with thousands of members, focused on COVID-19 survivors or long COVID sufferers. One group, Survivor Corps, for COVID-19 survivors in general, has almost 180,000 members.
“It was a space where people could ask why did this happen to us?” said Melissa Mazur, 40, a Philadelphia lawyer who found Facebook groups for long COVID sufferers after her infection in March 2020. “It was very validating because it was a very stressful time for everyone, but I had some friends who were questioning whether my symptoms were all in my head, whether it was a stress response to the pandemic.”
Long COVID, or post-acute sequelae SARS-CoV-2 infection (PASC), is an umbrella term for a wide range of symptoms that persist for weeks or months after a COVID-19 infection. Fatigue, brain fog, and shortness of breath are common complaints, but the list of problems sufferers note is long and varied. The Centers for Disease Control and Prevention reported in September study results that found the condition may be more common among women, those ages 40 to 54, and people with preexisting conditions. It is more likely in people with the most serious infections but has been reported in those who never got sick enough to require hospitalization.
Health experts have estimated that at least some COVID-related symptoms linger for 10% to 30% of all people infected with the virus, somewhere between 5 million and 12 million people in the United States. A study released this month found up to half of all people with the virus experienced lingering symptoms, including mobility, pulmonary, and mental health complications, for up to six months after their infection.
For varying lengths of time, it saps people of their ability to work, exercise, socialize, and even think clearly. What can be just as bad is that sufferers often feel isolated, with friends and even physicians sometimes telling them their health problems could be psychosomatic. Some describe feeling depressed and experiencing post-traumatic stress disorder.
Aside from the physical symptoms, long haulers, as they call themselves, live with profound uncertainty. Symptoms recede, then return, sometimes inexplicably. Apparent recoveries can be followed months later by heartbreaking relapses.
“People have sought medical care and they’re not getting any answers,” said Marc Goldstein, chief of allergy and immunology at Pennsylvania Hospital, who has 10 to 15 patients experiencing long COVID. “I think it makes a lot of sense that people are feeling really blue from having this problem.”
The result can be an overwhelming loss of self. People who have been athletic all their lives suddenly can’t work out. People who have always held jobs can’t work. Extroverts find themselves exhausted by social occasions. For some, the symptoms clear in weeks. For others, there’s no end in sight.
“There are times I feel like I’m looking at my life and myself from the outside in,” said Hackett, who has been able to keep working from home in her public relations job for Magee Rehabilitation at Jefferson Health.
Her ongoing symptoms include burning sensations, chest tightness, memory loss, brain fog, and ADHD.
Hackett has found kindred spirits through her social media posts on TikTok, Instagram, and Facebook. These connections transcend geography, with people suffering long COVID building friendships across the country, and even across oceans.
Michael Fehely, a 62-year-old living in the San Francisco Bay Area, has struggled with long COVID since he caught the virus in February 2020, back when most Americans had no idea what was coming. He befriended Hackett after seeing her Instagram posts with the hashtag longcovid. The variety of sad and funny videos in Hackett’s account caught his attention, and he began sharing them with friends.
“To be honest I’ve met people all over the world that are dealing with this,” he said. “We’re all kind of dealing with the same thing.”
The online community is important, he said, because long COVID leaves some sufferers too exhausted for in-person gatherings — even if they weren’t more worried than most about ending up with a breakthrough case of the virus.
“It plays an extremely important role,” said Samantha McConnell, 30. “Most of my friends now are long-haul friends in the long-haul community even though I haven’t personally met them. It ‘s hard for me to relate to my friends I had prior.”
The Philadelphia woman and mother of two was a pre-K teacher when she caught COVID-19 in January 2021. Since then, she has experienced bouts with nausea, weight loss, and a recurrence of flulike symptoms if she exerts herself doing tasks as simple as washing dishes or getting dressed. Then there’s the confusion.
“I get really bad ...,” she said, pausing as she struggled to finish the sentence, “well, brain fog. Losing words, as I’m doing right now.”
She hasn’t worked since her infection.
McConnell connected with Hackett through COVID-19 Longhauler Advocacy Project on Facebook, she said, and through her found a doctor in Philadelphia with experience treating long COVID.
Karyn Bishof, a 32-year-old firefighter paramedic from Boca Raton, Fla., who has had long COVID since April 2020, founded the group to survey fellow sufferers early in the pandemic, she said. Since then, the group, with almost 7,000 members, has transformed into a place to find resources and build advocacy for sufferers.
“The support that the community gives to one another is unique,” Bishof said. “Not only are these people sick, they’re mourning who they used to be. A lot of times, these people don’t have anybody in their lives who empathizes.”
She routinely filters out posts full of misinformation and falsehoods from her group, she said, a task made more difficult because long COVID is so poorly understood.
“Everyone is so desperate for a solution and for an answer,” she said. “As time evolves, things that we thought were misinformation aren’t, and things that we thought weren’t misinformation are.”
On balance, the benefits of social media for long COVID patients can outweigh the risks, said Daniel Salerno, director of critical care services in the respiratory intensive care unit at Temple University Hospital.
“I think with pure social media it’s hard to separate those sorts of things, but I think still it could be very helpful as a support tool,” said Salerno, who recommends his long COVID patients seek out such sites.
A few days ago, a woman who has spent a year looking for help with her symptoms left a message after seeing one of Hackett’s videos.
“Your page kept me from ending my life today,” it said.
The message reduced Hackett to tears.
“I never knew what it meant at all to live with a chronic illness until I got this,” she said. “Right now the only thing I know how to do is get on social media and talk about it.”