This grassroots group supports COVID-19 survivors around the world. Here’s what Canada’s social impact sector can learn.

About six months after being diagnosed with COVID-19 (and recovering, ostensibly), Diana Berrent’s 12-year-old son was sitting on the couch watching TV when one of his front teeth spontaneously fell out of his mouth. He hadn’t knocked it on anything and it hadn’t been loose. And curiously, there was no blood. Berrent took her son to the dentist, who was just as confused. “He was like, ‘It should look like a murder scene,’” she says. 

Out of curiosity, Berrent made a post in the Survivor Corps Facebook group — a grassroots organization she founded to bring together survivors of COVID-19, with about 130,000 members from around the world including 3,000 Canadians. ”The answers were flooding in,” she says, from survivors claiming to have had the same experience: losing an adult tooth inexplicably and without any blood loss. 

While there aren’t any known dental symptoms associated with the virus and she still doesn’t know for sure why her son lost his tooth, Berrent felt comforted by the idea that her family might not be alone in this experience. The value of being able to connect instantly with a vast community of other survivors was clear to Berrent in that moment.

It was because of the unknowns associated with the virus that Berrent founded Survivor Corps in the first place. She was one of the first people in her region of New York State to test positive back in early March, and while in recovery became “obsessed” with learning about the medical research around the virus. A few weeks after Berrent recovered, she was patient #0001 in Columbia University’s clinical trial recruiting survivors to donate convalescent plasma. 

“There are moments like a pandemic, during a global collective crisis, when we need collaboration and efficiency above all else, so I started Survivor Corps with the mission of mobilizing an army of survivors to donate their plasma and support science in every way possible,” she says. Berrent and her team are also working with a data scientist to comb through the more than 2 million posts in the Survivor Corps Facebook group to document both short-term and long-term symptoms of the virus that members are reporting. “We are literally sitting on the greatest data set on non-hospitalized patients in the world,” she says.

“We are literally sitting on the greatest data set on non-hospitalized patients in the world.”

But over time, Survivor Corps has taken on another important function: a network of community and social support for COVID-19 survivors, a place where survivors can connect with one another, especially given the stigma they may be facing from others in their lives. And not only does the group provide a platform for connection, but through the organization, Berrent herself works to make sure survivors have the most up-to-date information about the virus possible through webinars, including one featuring Dr. Anthony Fauci. 

About 386,000 Canadians have recovered from COVID-19, and another 76,000 have active cases. With potential long-term physical, mental and even social impacts of having survived the virus, these hundreds of thousands will likely need support for years into the future. 

 

Survivors need support navigating an uncertain recovery path

One of the most troublesome parts of being a COVID survivor, Berrent hears from those in her network, is that there’s no solid information about what the virus does to the body long-term. 

Dr. Katy Kamkar, a clinical psychologist at the Centre for Addiction and Mental Health (CAMH) says this can be anxiety-inducing. “We can start with one what-if question, and then, given all the circumstances going on, the fluidity, the uncertainty, it’s very easy for us to go from one what-if question and to quickly turn that into a catastrophic scene. And then we feel helpless. We feel powerless.” 

And some of these fears might not be unfounded. “What we were starting to see around April [2020] was that people were not recovering, and that was startling,” says Berrent. Survivors have reported long-term neurological symptoms, fatigue, and even, like Berrent’s son, inexplicable symptoms like dental nerve damage. And because the virus is novel and healthcare systems are overwhelmed already with active cases, “there is no standard of care for people who have not recovered, so people are turning to each other.” 

One Facebook group member writes, for example, “After almost 3 years of trying to conceive, I gave up after getting covid in September because the effect covid has had on my body. I just found out today that I’m pregnant. I’m shocked and scared! Anyone else get pregnant AFTER having covid? Or know the risks of it on a fetus?” 

This kind of post encourages Berrent. “While each individual post can be heartbreaking, I think there’s something really beautiful about the site as a whole. I call it the epicentre of hope,” she says, “You see people reaching out to each other in the middle of the night to talk on the phone.” One member has even taken it upon herself to create a directory of COVID-friendly doctors around the world. 

While community support and shared experiences are powerful, it’s also important that survivors have access to verified information about emerging research on COVID-19’s long-term symptoms and impacts on the body. As is the case with building trust and distributing information about the vaccine, Berrent says social service organizations with strong ties to the communities they serve are well-positioned to also provide this information to survivors. 

Social service organizations with strong ties to the communities they serve are well-positioned to also provide this information to survivors. 

Organizations could also provide community and social support, but in order to do so effectively there’s a need for data on survivors’ experiences and needs post-COVID, says Kamkar. Survivors’ experiences can vary so widely “in terms of whether the person was alone or with family members, the type of support available to the person, the isolation.” Understanding how each unique factor impacts a survivor’s mental and emotional health will be key to providing adequate support, she says.

 

Stigma and racism are barriers to reaching survivors

But reaching some survivors with both information and community support could be more difficult, says Dr. Josephine Tsang, CEO of the Calgary Chinese Community Services Association (CCCSA). 

A coalition of Canadian organizations has come together to create Fight Covid Racism, a platform for people to share their stories of being targeted with racism related to the pandemic. They’ve recorded 395 incidents across the country, so far. U.S. President Donald Trump has repeatedly called COVID-19 “the China virus.” 

Because of this racism and xenophobia, Tsang says she doesn’t know that clients of the CCCSA would even seek support services if they were to offer them to survivors, as they might be reluctant to self-report that they’d had the virus. “I was in close contact with someone who has COVID, and even I found myself being worried about sharing with my contacts,” she says. “Even sharing that, I felt weird, so I can imagine what other community members are going through.” 

This is especially concerning, since many of the clients the CCCSA serves are in low-income brackets, more likely to work in frontline positions and therefore more at risk of getting COVID. 

Tsang says in the case of people targeted by racism during the pandemic (and even those who haven’t been, as regardless of race, many survivors report feeling stigmatized by friends and family after having the virus), any support services social impact organizations offer to survivors should be confidential, while at the same time the social sector should work toward destigmatizing the COVID experience. 

Support services social impact organizations offer to survivors should be confidential, while at the same time the social sector should work toward destigmatizing the COVID experience. 

Tsang also says the CCCSA doesn’t have funding for the work the organization has been doing so far to provide its community with accurate information about COVID-19 guidelines, particularly translating it into Chinese languages, so she’s not sure if they’d have the capacity to add sharing information about long-term symptoms and impacts of COVID-19 to their list of to-dos. 

 

Survivors are searching for agency in a politicized pandemic

In the face of so much uncertainty and global chaos, Berrent says survivors are grasping at a sense of agency. 

She says it’s been heartening “to have 127,000 people having the most civil, supportive conversations about what has, bizarrely, become a controversial issue. But there is no controversy in Survivor Corps. Nobody is arguing about vaccines. Nobody is suggesting that this might be a hoax. Nobody is questioning the validity.” Still, Berrent says it’s difficult to see the global politicization and discrediting of what she and other survivors went through. “It’s empowering to be in a group where you are believed.”

She and other members of the group are also coping by taking action, finding agency and power in contributing to ending the pandemic through contributing to the research and coming together as a united front.

“Although it acts as a support group, it is really a movement.”