This unlikely support group began as a way for 32-year-old Andrey Khudyakov, from Paris, to keep in touch with his family members during the pandemic, some of whom live in New York, others in Sweden and some in Italy. They began inviting friends to the Facebook group, who added their own friends and soon the online community grew to more than 28,000 members.
“It’s very hard when you’re all alone by yourself at home locked down. And maybe sometimes you don’t have family support,” he says. “And you just need to share with someone what’s going on and have feedback.”
“It gives people who have a common purpose a forum to speak openly and to feel a little bit less alone,” she says. “The ability to share your story and talk about details that might make us feel humiliated or might make us feel ashamed when in reality what we need to do is really share our story … and get the support of others.”
“They’re all supportive, it’s just amazing to see all this exchange,” Khudyakov says.
‘I was searching for hope’
Marialaura Osorio, 23, found Khydakev’s group after battling panic attacks following a Covid-19 diagnosis.
When health officials first raised alarm months ago, Osorio and her roommates took the threat of the virus very seriously, she says. They drafted a set of rules: they’d only invite up to two people in their home, their guests all had to be working from home and they wouldn’t participate in other gatherings. She stayed locked down at their Austin home since mid-March.
“I was literally the crazy one with this whole thing,” she says. “And I’m the only one that got it.”
By June, with loosened measures in the state, Osorio says she let her guard down and decided to visit family and friends and go for a round of drinks.
“I thought it was an outdoor bar, we’re going to be fine, we’re not in danger, they checked our temperatures,” she says. “I felt pretty safe, but obviously it wasn’t safe.”
Two days later, she had her first cold-like symptoms. And about ten days after that, she tested positive for coronavirus.
“The first four days from getting my result it was just like, I was in bed having panic attacks,” she says. “It was just horrible.”
She told one roommate, who stayed with family as Osorio went into isolation. The second roommate, she says, got so upset with the news they moved out. Osorio decided she wouldn’t tell any other friends or anyone outside her immediate family about her positive result. Cooped up at home with no one around, her mind fled to the worst-case scenarios she read in the news: that she’d end up deeply-ill in the hospital or that she wouldn’t be able to survive the infection. Desperate to find messages of recovery and survival, she turned to Facebook.
“I was searching for hope” she says. “So being able to post questions on there or read and support each other was just, honestly, I could totally 100% say that that is one of the huge things that got me through Covid.”
She found members who encouraged her to stay positive, to believe in her recovery. Others offered her guidance on how to build up her immune system, how to check her oxygen levels and recommended natural remedies they found helpful. She says more than a month since her positive result, there are still people she’s never met who check in on how she’s recovering.
“I would have ended up either in the hospital or my panic attack would have caused like heart problems or something,” she says. “I’m just so thankful to that group.”
An army of survivors
Diana Berrent also remembers the isolation she felt recovering from the virus.
When the 46-year-old 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 didn’t have an experienced group to turn to. She locked herself in a room, away from her husband and two children, and recorded her journey in a video diary as she paced through stomach issues, severe headaches and high fevers.
“It’s really extreme isolation and a lack of information,” she says. “And that is a very, very scary place to be.”
The early days of her recovery process felt like she was taking two steps forward and then a step back, with symptoms coming and going. It was worst at night, Berrent says, when fears of going to the hospital or ending up on a ventilator would crowd her mind. But when she began feeling better, she had a realization that changed her life.
“I realized that if I was going to be one of the first people diagnosed, if all went well, I’d be one of the first survivors,” she says. “And with that came both the tremendous responsibility, but also an opportunity.”
She donated her plasma — not once, but eight times. The more time she spent reading about how important those contributions were during this pandemic, the more she felt eager to mobilize crowds to donate their own antibodies once they had recovered.
So Berrent created a Facebook group and pieced together a website that helps Covid survivors connect with not only each other, but also with plasma and blood banks near them, as well as medical studies they qualify for that could help find treatment for the illness. The group, Survivor Corps, now has more than 80,000 members.
“I can’t talk about it without getting this ear to ear grin on my face,” she says in an appeal to other survivors to donate plasma. “Because, in a lifetime, how many opportunities do we have to save a single life?”
The group has become a massive forum with members sharing information on just about anything regarding the virus. Put a keyword in the group’s search bar, Berrent says, and you’ll find hundreds of posts made by members on anything from symptoms, their experience through isolation to pictures of recovery.
“It’s providing a community for … a lot of people who are living in a world where people don’t believe them, who are afraid of them, (where) they feel like a pariah, they’re afraid to tell anybody,” she says. “And so this is an outlet, a community, a source of inspiration.”
A nurse tackling stigmas online
In Dallas, Bryan Bailey’s work keeps him thinking about the coronavirus all day. When he goes home, he logs on to the online support groups he’s joined to help dozens of strangers he’s never met who are going through symptoms.
“The only time I’m not talking about Covid since February has been when I’m asleep,” Bailey said.
Bailey, the director of nursing at a behavioral health facility that also treats coronavirus patients, says after helping a friend deal with the anxiety that came with her coronavirus diagnosis, he decided to join online groups to guide others through their experience with the virus. Support groups, he says, allow their communities to compare and contrast their symptoms, track patterns and help each other understand what could be a virus symptom and what could be something different, like allergies. They are needed safe spaces where no question is a bad one, Bailey says.
“From my role and my nursing background and my personal passion for mental health, (I know) a lot of people don’t ask questions,” Bailey said. “We know as healthcare providers, when they come to us, there’s a lot of things that they feel embarrassed to talk about and that they struggle with.”
Those taboo subjects for coronavirus patients can range anywhere from asking about diarrhea to brain fog to hallucinations, he says.
“So, (the group) was a great channel and vehicle for me to help other people,” he added.
When he tested positive himself, he says he was initially hesitant to share his positive result — worried about the stigma he had been helping combat.
“I struggled with whether to … tell my own story.” he says. “And I realized that, ‘My gosh, I’m 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 something almost permanent, Bailey says. With health officials now recognizing the long-term health effects that survivors have been reporting for months, Bailey says fears of infecting loved ones can mean those who once tested positive are afraid of leaving their house again.
With a heightened sense of anxiety the virus has created, Bailey says, “I think every American … thinks that if they cough or hiccup or sneeze, now (they)’ve got Covid.”
And some people who have stayed healthy are now avoiding contact with anyone who tested positive — even if that test was months ago.
The groups have been a vehicle to tackle those stigmas. And for people who have been fortunate enough to recover, he says the groups that served to better the patients’ mental health played a major role in that process.
“Your mental health is very important when you’re dealing with this,” Bailey says. “And you’ve still got to do a lot of self-care, not just physical care, but a lot of self-care and you need support.”