Covid ‘long haulers’ have nowhere else to turn — so they’re finding each other online
For Smith, joining the Slack group meant accepting that as her struggle continued with no end in sight, she could not go on alone. “As strong and independent as I think I am, I had to admit that I needed other people to help me,” says Smith, who still has symptoms to this day.
The pandemic has spared no one from loneliness. The sick survive or die away from their loved ones. The healthy converse through computer screens, smile under face masks from six feet away. But for “long-haulers” who have suffered covid-19-related symptoms for 30-plus days, the isolation runs layers deep. They face doctors who don’t believe them; media that often ignore them; friends and family who don’t understand why they aren’t better; and a virus that, with each passing month, pushes them deeper into the unknown. Being a long-hauler means being “displaced,” says Melanie Montano, 32, a New Jersey-based administrator for the Slack group. “We’re not dead but we’re not living.”
With nowhere else to turn, long-haulers have been finding one another online. They write collaborative histories in Facebook posts and develop their own lexicon in Slack channels. They organize academic studies of themselves and crowd-source advice on how to deal with skeptical doctors and why to avoid underwire bras. They might be physically distanced, but they could not be more united in body — in brain fogs and blood clots and midday naps. Across oceans and time zones, they have become living affirmations for each other that the many health problems they experience are not just in their heads. And once strangers, many have become friends.
By the time Kimmy Campbell stumbled upon a long-hauler support group on Facebook 2½ months into symptoms, she had seen 10 specialists and had zero answers. Until then, the 39-year-old family therapist and mother of four in Pembroke Pines, Fla., was unsure whether she had the virus, but the group was a revelation. Scrolling through the stories of unending headaches and shortness of breath, she sat at her dining room table with her husband and cried for two hours. “It didn’t matter whose story I read. There was a piece of me in every single one,” she says.
Her posts to the group, which is now called Long Haul COVID Fighters Round 1 (80+ days), have slowly become more personal. “I can’t tell you how many times I talked myself out of going,” she said on June 5 of finally deciding to visit to the emergency room for chest pressure and limb pain. Later in the month, she wrote, “I CANNOT begin to thank you all for praying for me, sending good vibes, thinking of me. Whatever you did with healing intention I thank you. You guys are part of my village and I’m truly grateful.”
Campbell noticed Smith in the group and admired her increasingly “relentless” posts. “I remember thinking, what an intelligent woman, what a brave woman,” she says. Now, they exchange voice notes regularly — about their symptoms, their families, and their prayers. “I don’t know if I would be where I am without her and a couple of other people in these groups,” Smith says.
For many long-haulers, the testing deficits that defined the early days of the pandemic continue to haunt them. While some tested positive for the virus or its antibodies, others (such as Smith) tested negative or did not have access to testing. The latter group is often barred from covid-19 recovery programs and studies, and some doctors write their covid-19-like symptoms off to anxiety. (The FDA has advised that because test results are not always accurate, symptoms should be a factor in a diagnosis.) Recently, the media has been giving the long-hauler phenomenon increased attention, and some doctors are coming around, treating patients as “presumed covid-19.”
To the long-haulers connecting online, what matters is that they’re suffering, physically and psychologically. Claire Hastie describes the 23,000-person Facebook group Long Covid Support Group, which she started in May, as a “virtual joining of hands.” In the group’s early days, Hastie recalls, long before it was getting over 200 posts per day and 1,000-plus new members a week, a “highflying” chief-executive-type man posted about how he could not bring himself to tell his family about his persistent symptoms and that the group was the only support he had. “It’s humbling that we’ve been able to provide this safe space for this ‘alpha male,’ for want of a better phrase, to share such vulnerable information that he is not sharing with anyone else,” says Hastie, who’s 48 and based in the United Kingdom.
Kevin Wright, a professor who studies health communications at George Mason University, likens online support group relationships to the “stranger on a plane phenomenon.” People will share their life story while sitting next to you because they know they probably will never see you again and the information won’t get back to their inner circle. Among long-haulers, many of whom are stuck at home and would never cross paths in real life anyway, that plane-ride closeness lasts indefinitely.
Plus, returning to pre-covid-19 relationships can prove difficult. “A lot of my friends are always very concerned about catching covid-19,” said Adina Gerver, a 41-year-old moderator for Hastie’s Long Covid group who lives alone in New York City. “But my main worry is that I’ll be tired forever and not be able to work my normal three jobs.”
Fiona Lowenstein, founder of the Body Politic Covid-19 Support Group Slack channel that Smith joined, which has 8,000 active members, says she talks to her covid-19 friends more than her Before Time friends. The 26-year-old in New York City wrote an essay for Teen Vogue about covid-19 patients losing friends, and notes that the sick often cannot participate in typical pandemic social activities like Zoom happy hours or outdoor runs.
Alexandria, Va.-based long-hauler Cynthia Adinig, 35, finds it difficult to even explain her symptoms to people who haven’t experienced them. How do you tell friends you’re too hoarse for a phone call? Or in too much of a brain fog to type coherent messages? With fellow long-haulers, “You can just say, ‘Hey, today I can’t spell,’ And it’s a nonissue. It doesn’t come with a whole set of questions,” she says.
The intimacy and goodwill fostered in these groups can be hard to preserve as they grow into a virtual town. An early Facebook group, Survivor Corps, has ballooned to over 100,000 members. Another, Long Haul Covid Fighters, split into two “rounds” according to how long members have been symptomatic. The Slack group changed platforms twice, operating on WhatsApp for just 12 hours before surpassing the 256-person cap. Its volunteer administration team has grown nearly sevenfold. Long Haul Covid Fighters Round 2 instituted “self-care Sunday,” when new posts aren’t allowed. On Long Covid, moderators receive alerts if a keyword such as “masks,” which could spark controversy, appears in a post.
For some, the regulations go too far. Many long-haul Facebook groups limit political speech. But the Slack group grew out of a queer feminist wellness collective, and Smith, who is Black, has found it more welcoming to discussions on covid-19 and race than some Facebook groups. “It is not a group for likes. It is a group that pays attention to the -isms of people who suffer with covid-19,” she says.
On Slack, chat rooms are grouped by categories such as duration of illness, body system and specific community, such as LGBTQ+ or “solo riders” facing the virus while living alone.
Smaller Facebook groups have also appeared. When Ryan Brown, 42, joined the 350-person Utah-specific group and shared a dermatologic problem with founder Lisa O’Brien, she pointed to several members who might be able to help off the top of her head. “She seems to know everybody’s ailments at one time or another,” he says. “It’s pretty incredible.”
Margot Gage, a 38-year-old epidemiologist in Beaumont, Tex., founded a group specifically for long-haulers who are BIPOC (Black, Indigenous and other people of color). She connected with Adinig over parallel instances of medical racism: Both women were assumed to be having a drug overdose when presenting with shortness of breath. Adinig is drawn to the BIPOC group for its intimacy — members know each other’s stories, follow up on posts and reach out if they haven’t seen her active for a while.
While organizing her medicines in the morning, Adinig spends hours exchanging messages with Smith, the Baltimore teacher, or her “covid-19 twin” Miranda, who has similar symptoms.
Smith still feels effects. And when asked about her covid-19 friends around the country, Smith’s voice breaks. “I pray to God that there is an opportunity for us to meet up somewhere where we can celebrate a victory of recovery,” she says. “I know that we’ll be friends for life, because this virus is so vicious that it bonds you in the craziest way.”
