One survivor is using his experience dealing with long Covid to help others struggling with the condition and the painful emotions that can torment them by running a pop-up virtual support group for long-Covid patients that runs 24 hours at a time so people in any time zone can find help when they need it.
Dave, 43, spoke with us on condition that we not use his last name to protect his privacy. He said he was motivated to start the support group after meeting other long Covid survivors through Body Politic, an online community for Covid patients. He and a fellow long-hauler came up with the idea because they found that people with this illness can become extremely isolated and may need to see a friendly face day or night.
Dave or one of the other long haulers that run the group take turns hosting the group on Zoom. People who want to join a meeting can ask one of the organizers for the link and password by direct-messaging them on Twitter.
“It’s just this community of people,” Dave said in a telephone interview. “A lot of them sit on these calls all day long, because they can’t do anything else.”
turning to the internet for answers
Long Covid is a debilitating condition that affects up to one in three coronavirus survivors. It has a wide range of effects, but it often results in disabilities including extreme pain, fatigue and cognitive deficits. And patients often end up feeling extremely isolated, lonely and depressed.
Efforts like Dave’s support group are outgrowths of the pandemic as many long Covid patients are weary of having to face the burdens of the condition alone. Many long-haulers have felt disappointment and fear when they realized medical professionals, not only have few answers to the whats, whys and how-longs, but often do not believe their complaints.
As a result, long Covid patients have flocked to online forums for community, understanding and validation. At Body Politic, the online support group Dave joined when he first got sick, thousands of members can communicate on a series of message-board channels on Slack about general topics and also about specific things like neurological issues, caretakers, gastrointestinal effects, parents and children and so on.
Facebook hosts multiple support groups including the Covid-19 Long-haulers Discussion Group, and the Covid-19 Longhauler Advocacy Project. Another well-known support group is Survivor Corps, which facilitates a Covid survivors website and a Covid survivors Facebook page.
Clubhouse, the audio app, has hundreds of rooms discussing various Covid topics. TikTok has thousands of Covid-related accounts.
Mental health has been a big issue for Covid patients. Among the documented symptoms – in addition to debilitating physical symptoms – have been things like anxiety, depression and insomnia. Suicide is not unknown; one well-known Covid patient, Heidi Ferrer, killed herself in 2021 after a difficult battle with the condition, and the Texas Roadhouse founder, Kent Taylore, killed himself in 2021.
In his case, Dave said much of his painful experience came from feeling like he lost not only his health, but also his identity and his plans for the future when Covid struck just over two years ago.
“I was in my prime,” he said. “I was [working] 14 hours [a day] on my feet. I did bodybuilding routines, like five days a week in the gym.”
Dave spent the last 20 years working as a bartender and owned a catering company. He was also getting ready to open his own bar and restaurant, a business he said took several years and a lot of hard work.
The virus changed him from an independent, exceptionally healthy professional to someone who is forced to rely on his girlfriend for everything from financial survival to activities of daily living. Today, Dave said, even simple tasks leave him needing bedrest for a day or two.
“I was the guy who took care of my mom, I took care of my family,” he said. “I was building my business and this next stage of my life, and, and then boom, gone.”
‘We’re going to have you walk out of here’
Dave was totally unprepared when his old life ended for good in March of 2020.
“I went to bed that night and I felt some chills,” he said. “I woke up the next day and I was like, boy, I’m tired. I just feel run down.”
By then he was running a low-grade fever and called out sick from work. A few days later he collapsed and was rushed to the hospital.
“They kept me overnight,” he said. “Then I went home and I never got out of bed after that.”
Over the next two and a half weeks, Dave went to the emergency department repeatedly with severe trouble breathing and dangerously low blood-oxygen levels. But each time he was discharged – including after one 11 day stay – doctors kept assuring him he would completely recover soon.
They were wrong. Not only did Dave not fully recover, but frightening new symptoms continued to arise, including an extremely rapid heart rate.
In the early days of the pandemic, doctors did not know much about what happens to people after getting Covid.
“The doctors were like, you’re young and healthy and strong,” he said. “They were like, we’re going to have you walk out of here.”
‘I truly understand what this is all about. It’s painful.’
Dave said it has been hard to share his story with others, especially people who don’t know what it’s like to become disabled almost instantly.
“People don’t want to hear about the struggle,” he said. “It’s very hard [for them] to hear [us] talk about things that make them feel like their health is something they’re not in control of.”
Losing relationships made him feel even worse.
“At some point, everybody disappears when you’re just chronically ill,” Dave said.
He had also been profoundly changed by the trauma of being so sick for so long.
“I was like, alpha male guy, you know, sensitive and empathetic, but like, hey, look, you get through this. It’s mind over matter,” he said. “If you would have told me something about PTSD, I’d say, well, maybe if you went to war, whatever, but I’d be like, you can get over this. And now I truly understand what this is all about. It’s painful.”
Staying afloat
He desperately needed to be around people who shared his experience. This need led him to Body Politic, his first support group.
“That became like my community of people,” he said. “And I was very, very active there.”
The group met on the social platform, Slack, which has breakout channels so users can meet in smaller, more specialized groups. There, he found he could once again use his personality and talents to help others.
“They had a channel for social coordination,” Dave said. “And I’m a really outgoing guy, you know, being in the bar business and everything else.”
He decided to spearhead his own small group. Once a week, long-haulers met on Zoom to share information and support each other. Not only was his group well-received, but demand for connection, community and solidarity among long-haulers began to grow. So he and a friend started offering more online meetings.
“It ended up blooming into this thing, where we just ran a room 24 hours a day, seven days a week,” he said. “And this group of people that have been like family, and I think a lot of people are, are going through that, you know, they need that support.”
That was a year and a half ago and the need for the group is as great as ever.
“I don’t think anything like that has ever existed,” he said. “So it’s like our little corner. We’re not therapists, we’re just people with long Covid supporting each other.”
