This unlikely support group began as a way for 32-year-old Andrey Khudyakov of Paris to stay in touch with his family members during the pandemic, some of whom live in New York, others in Sweden and others. in Italy. They started inviting friends to the Facebook group, who added their own friends, and soon the online community grew to more than 28,000 members.
“It is very difficult when you are alone at home locked up. And maybe sometimes you don’t have family support,” he says. “And you just need to share what is happening with someone and have comments.”
“It gives people who have a common purpose a forum to speak openly and feel a little less lonely,” he says. “The ability to share your story and talk about details that can make us feel humiliated or embarrassed when what we really need to do is share our story … and gain the support of others.”
“Everyone supports, it’s amazing to see this whole exchange,” says Khudyakov.
‘I was looking for hope’
23-year-old Marialaura Osorio found Khydakev’s group after battling panic attacks after a diagnosis of Covid-19.
When health officials first raised the alarm months ago, Osorio and his roommates took the threat of the virus very seriously, she says. They drafted a set of rules: they would only invite up to two people into their home, all of their guests had to work from home and would not participate in other meetings. She has been locked up in her Austin home since mid-March.
“I was literally crazy about all this,” she says. “And I’m the only one who got it.”
By June, with less stringent measures in the state, Osorio says he let his guard down and decided to visit family and friends and go for a drink.
“I thought it was an outdoor bar, we’ll be fine, we’re not in danger, they checked our temperatures,” she says. “I felt pretty safe, but it obviously wasn’t safe.”
Two days later, she had her first cold symptoms. And about ten days after that, he tested positive for coronavirus.
“The first four days since I got my result was like, I was in bed having panic attacks,” she says. “It was just horrible.”
He told a roommate that he stayed with the family when Osorio was isolated. The second roommate, he says, was so upset with the news that they moved out. Osorio decided that he would not tell any other friend or anyone outside of his immediate family about his positive result. Locked up at home with no one nearby, her mind fled to the worst-case scenarios she read on the news: that she would end up seriously ill in the hospital or that she would not be able to survive the infection. Desperate to find recovery and survival messages, she turned to Facebook.
“I was looking for hope,” she says. “So being able to post questions there or reading and supporting each other was honestly totally able to say 100% that that’s one of the most important things that helped me get through Covid.”
She found members who encouraged her to stay positive, to believe in her recovery. Others offered guidance on how to strengthen your immune system, how to control your oxygen levels, and recommended natural remedies that they found helpful. She says it’s been over a month since her positive result, there are still people she never met who check on how she is recovering.
“I would have ended up in the hospital or my panic attack would have caused heart problems or something,” he says. “I am very grateful to that group.”
An army of survivors
Diana Berrent also remembers the isolation she felt recovering from the virus.
When the 46-year-old woman tested positive for coronavirus on March 18, she says she was one of the first residents in her New York community to be diagnosed and did not have an experienced group to turn to. She locked herself in a room, away from her husband and two children, and recorded her trip in a video journal while reviewing stomach problems, severe headaches, and high fever.
“It is really extreme isolation and a lack of information,” she says. “And that’s a very, very scary place to be.”
The first few days of his recovery process, he felt like he was taking two steps forward and then one step back, with symptoms coming and going. It was worse at night, Berrent says, when fears of going to the hospital or ending up on a respirator would overwhelm him. But when he started to feel better, he realized that his life changed.
“I realized that if he was going to be one of the first people diagnosed, if everything went well, he would be one of the first survivors,” she says. “And with that came tremendous responsibility, but also an opportunity.”
She donated her plasma, not once, but eight times. The more time she spent reading about the importance of those contributions during this pandemic, the more eager she was to mobilize the crowds to donate their own antibodies once they had recovered.
So Berrent created a Facebook group and created a website that helps Covid survivors connect not only with each other, but also with plasma and blood banks near them, as well as with medical studies for which they qualify that could help find treatment for the disease. The group, Survivor Corps, now has more than 80,000 members.
“I can’t talk about it without having this ear-to-ear smile on my face,” he says in a call to other survivors to donate plasma. “Because, in life, how many opportunities do we have to save a single life?”
The group has become a massive forum with members sharing information about almost anything related to the virus. Add a keyword to the group’s search bar, Berrent says, and you’ll find hundreds of member posts on anything from symptoms, their experience through isolation to recovery images.
“It is providing a community for … many people living in a world where people do not believe them, who are afraid of them, (where) they feel like an outcast, they are afraid to tell anyone,” she says. “And so this is a way out, a community, a source of inspiration.”
A nurse addressing stigma online
In Dallas, Bryan Bailey’s work keeps him thinking about the coronavirus all day. When he returns home, he logs in to online support groups he has joined to help dozens of strangers he has never met and who are experiencing symptoms.
“The only time I’m not talking about Covid since February has been when I’m asleep,” said Bailey.
Bailey, director of nursing at a behavioral health center that also treats patients with coronavirus, says that after helping a friend cope with the anxiety associated with her diagnosis of coronavirus, she decided to join online groups to guide others to through his experience with the virus. Support groups, she says, allow their communities to compare and contrast their symptoms, track patterns, and help each other understand what a symptom of the virus could be and what could be something different, such as allergies. Safe spaces are needed where no question is bad, says Bailey.
“From my role and my nursing experience and my personal passion for mental health, (I know) a lot of people don’t ask questions,” Bailey said. “We know that as health care providers, when they come to us, there are many things that they are ashamed to talk about and that they struggle with.”
Those taboo topics for coronavirus patients can range from asking about diarrhea to brain fog or hallucinations, he says.
“So, (the group) was a great channel and vehicle to help other people,” he added.
When he tested positive himself, he says he initially hesitated to share his positive result, concerned about the stigma he had been helping to combat.
“It was hard for me to know if … tell my own story.” he says. “And I realized that, ‘My God, I am one of these people. Here I am telling them not to be afraid to talk about it, and I myself am afraid.'”
The virus has been stigmatized by many as almost permanent, says Bailey. Now that health officials acknowledge the long-term health effects survivors have been reporting on for months, Bailey says the fear of infecting loved ones may mean that those who have ever tested positive are afraid to get out of their home again.
With a greater sense of anxiety than the virus has created, Bailey says, “I think all Americans … think that if they cough, hiccup, or sneeze, they now have Covid.”
And some people who have remained healthy now avoid contact with anyone who tested positive, even if that test was months ago.
Groups have been a vehicle to address those stigmas. And for people who have been fortunate enough to recover, he says groups that served to improve patients’ mental health played an important role in that process.
“Your mental health is very important when it comes to this,” says Bailey. “And you still have to take great care of yourself, not just physical care, but a lot of personal care and you need support.”
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