War on Science

Fear, stigma and survival: inside Facebook’s coronavirus recovery groups

Around the world, people getting over Covid-19 are finding support and solidarity in the most unlikely of places

Vanessa Cruz, 43, from Chicago, contracted the coronavirus in March. Already living with rheumatoid arthritis, her symptoms were severe and myriad. Along with the usual fever and cough, she had a swollen face, nausea, and crippling fatigue. In April, the breathing problems began. In isolation from her children, her only contact with a doctor was via a “telehealth visit” by phone. Her Facebook feed was full of conspiracy theories, claiming the virus was not real. 

“A lot of people in my area, especially in Illinois – they were very doubtful about it. All I would see on social media was that it was a hoax, it wasn’t that serious,” she told me during a telephone call.

Then she found a sanctuary — a Facebook group that differed from many of the platform’s pseudoscience and conspiracy pages. It was full of people like her, who were also experiencing the ravages of the virus. She posted about her symptoms, people responded saying they had been through the same things. 

“I can tell you, the first time that happened to me, I believe I cried. I felt very validated. I had a huge list of symptoms, and I thought I was going crazy,” Cruz said. 

Millions of people around the world are now recovering from Covid-19. And thousands are coming together on Facebook to discuss the disease. Cruz is now an admin for the Covid-19 Support Group, which has grown to almost 26,000 members. It’s part of a network of dozens of pages for people who have had the virus. 

In Soweto township, South Africa, Patricia, 36, lives around numerous people who also think Covid-19 isn’t real. “In our townships they don’t believe it’s there. They just don’t believe corona exists, even if you show your pictures in the ICU,” she said during a telephone conversation. “My family and relatives never thought it existed until I got it.” 

Others in her community, however, harbor an abject terror of Covid-19. In August, after a 10-day stay in an intensive care unit with the virus, Patricia, who asked to be identified by a pseudonym for fear of being ostracized, found herself alone at home. She was overwhelmed by the thought of going outside. She posted a desperate, tearful video to her personal Facebook page.

“Now, I have to get out of the house and face the world. I’m not ready. I’m not ready. I’m scared,” she sobbed. A friend invited her to join a Facebook group called Recovered n Living, for South African Covid-19 survivors, where she found thousands of people who believed her story.

“You feel like you can only share this experience with the person who’s been through it too,” she said. Patricia now uses the group as a way to stand up to the stigma surrounding the virus in South Africa. 

“When you disclose it, people give you a different look. They’re so scared of you. It’s like when HIV-AIDS started, people will just try to run away.” 

But, even among those who have first-hand experience of the virus, conspiracy theories and misinformation have begun to percolate. Some individuals who have recovered from Covid-19 regularly write up their “miracle cures.” 

One group hosts posts advocating the use of a solution of turmeric and black pepper, which some users say saved them from death’s door. Another post extols the therapeutic virtues of a mixture of ocean water and copper. Cruz remembers when President Donald Trump made his comments about hydroxychloroquine – an unproven drug that he said was a viable treatment for Covid-19. The group was flooded with discussions of its supposed merits. 

“It was really hard to let the group understand that, ‘Hey, it’s not a cure,’” said Cruz, who takes hydroxychloroquine for her arthritis. She was forced to go without it for two weeks because of a shortage caused by people buying the drug, believing it would protect them against the coronavirus.

One 19,000-strong group, named Covid-19 Survivors and Support, featured a discussion of whether people who have recovered from the disease would get the standard flu shot this winter. One user wrote, “You’re going to get anti-vaxxers on this post 🙄,” while others began to discuss how they wouldn’t be getting the vaccine. “As a warning, if I see any of this anti-vaxxer crap, you’re getting deleted,” wrote an administrator. 

“Now, this discussion about, ‘Would I or would I not take a vaccine?’ – that’s a little bit trickier to manage. I’ve been letting people discuss it,” said Chrissi Kelly, the admin of a group for people who have lost their smell and taste after contracting the coronavirus. “Managing it has been an absolute nightmare,” she said of her admin duties.

Kelly, who is the founder of the U.K. charity AbScent, for people experiencing smell loss, added that the group had a zero-tolerance attitude towards junk science. “We stand for evidence-based science, we follow the national guidelines,” she said. 

However, anti-science discussions do still creep in. “We’ve had a couple about ‘Mask wearing is causing us to lose our sense of smell.’ Those people go straight out the door,” she said. “But people have to be given a place to talk, and we can’t be seen to be squashing people on the head. When I get something that really bums me out, because it’s so ignorant, then I send a message to that person.”

“Generally, there is quiet acquiescence.”

Illustration by Gogi Kamushadze

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Isobel Cockerell

Isobel Cockerell is a reporter with Coda Story. A graduate of Columbia Journalism School, she has also reported for WIRED, USA Today, Rappler, The Daily Beast, the Huffington Post and others.

Get in touch via [email protected] Follow @isocockerell