Doctors couldn't help these COVID-19 patients with their endless symptoms. So they turned to one another.

Connecting with others online has brought "relief, excitement, sadness that somebody else knows what you're going through."
Diana Berrent
Diana Berrent, who started a Facebook group for coronavirus survivors, donates convalescent plasma for an experimental therapy to treat COVID-19 patients.Courtesy Diana Berrent

Breaking News Emails

Get breaking news alerts and special reports. The news and stories that matter, delivered weekday mornings.
SUBSCRIBE
By Elizabeth Chuck and Erika Edwards

Jennifer English was sick, scared and confused. For two weeks, English, a single mother from Oregon City, Oregon, had had no sense of taste, a fever that reached 102.5 degrees and an uncomfortable tightness in her chest.

English, 46, who helps manage a restaurant and bar, suspected that she had the coronavirus and worried that her health might worsen, leaving her incapable of caring for her son. But in phone calls and virtual appointments, physicians downplayed her concerns.

She then started experiencing dizziness so overpowering that it caused her to collapse on her bathroom floor in mid-April. English went to an emergency room and demanded a test for COVID-19. An ER physician gave her the test but told her that she had likely had a panic attack — even though English has no history of anxiety — and sent her home.

Full coverage of the coronavirus outbreak

Two days later, her test came back positive. English was relieved to finally have a diagnosis, but she didn't get better, and doctors' suggestions — to rest and take a prescription cough medicine — didn't help.

Jennifer English with her son, Hunter, 14.Courtesy Jennifer English

So she joined a Facebook coronavirus support group on a friend's suggestion and immediately felt validated: People from all over the world were describing fevers that lasted for weeks, fatigue that wouldn't go away and a roller coaster of emotions as they coped with the unknowns of the novel illness, just as she was coping.

"That was huge, because I felt so alone at the time, and nobody was helping me," said English, whose fever lingered for 31 days.

COVID-19 is as mystifying as it is isolating. Those who get it are often separated from their loved ones, seeking answers the medical community doesn't yet have. As a result, millions of coronavirus survivors and relatives of patients are turning to a different source of information and support: one another.

"These are people who are at the scariest, most frightening moment of their lives, and they're alone," said Diana Berrent of Port Washington, New York, a photographer who founded Survivor Corps, the Facebook group that English joined, while Berrent had the coronavirus herself.

Diana Berrent donates convalescent plasma.Courtesy Diana Berrent

Her group now has more than 45,000 members.

"We have your back," Berrent said. "We understand."

Survivor Corps is among the biggest of such Facebook groups, but it is far from the only one: More than 4.5 million people have joined 4,000 U.S.-based COVID-19 support groups, according to Facebook.

While medical professionals generally warn against relying on health information found online, in this case, some doctors have been open to crowd-sourced ideas — especially as symptoms persist.

Dr. Ashley Stoecker, a family medicine doctor with Northwestern Medicine Regional Medical Group in Illinois, joined a Facebook group, Long Haul COVID Fighters, at the suggestion of one of her patients who had been struggling with symptoms for weeks.

She posted a survey to gather data about symptoms and duration of the illness, as well as whether patients had tested positive or negative.

"Seeing my patients suffering for as long as they are and feeling like I don’t have anything to do for them is really difficult."

The goal has been to "learn from the people experiencing these things on a day-to-day basis to see if there are things that can help us put together a picture in a puzzle that we don't have answers for at this point," Stoecker said.

"We are basically just treating the symptoms, because we don't have clear studies that have shown what can be helpful," she said. "Seeing my patients suffering for as long as they are and feeling like I don't have anything to do for them is really difficult."

Steering clear of misinformation

Like other social media platforms, Facebook has historically struggled to contain the spread of health misinformation and says it has taken an aggressive approach to moderating coronavirus content.

In April, it put misinformation warning labels on about 50 million pieces of COVID-19-related content. The company is also directing users who have liked or commented on coronavirus misinformation it has flagged to a website that debunks coronavirus myths from the World Health Organization.

But dangerous misinformation isn't the only problem patients can run into when heeding suggestions online, especially with the coronavirus, experts say.

Download the NBC News app for full coverage of the coronavirus outbreak

In addition to the symptoms caused by COVID-19, the disease can complicate underlying, chronic medical conditions. Primary care doctors are trained to account for both and to treat them appropriately — something Facebook commenters who "decide to become Dr. Google" can't do, said Dr. Jacqueline Fincher, president of the American College of Physicians.

"If you're diabetic or hypertensive or have congestive heart failure, going through a major illness like this can certainly impact those," she said. "Maybe your blood sugar is out of whack, and that's why there's more fatigue."

In the Survivor Corps group, nearly 30 volunteer administrators work to make sure all posts adhere to the page's rules, Berrent said.

"You can’t tell other people medical advice — unless it’s 'you need to go to the emergency room right now.'"

"If you post a scientific theory that doesn't have a scientific source attached to it or a YouTube video made in your kitchen or anything that is self-published, that gets taken down," she said. "You can give your anecdotal information on your experience, but you can't tell other people medical advice — unless it's 'you need to go to the emergency room right now.'"

Vicki Judd, 49, of Mohawk, New York, recently asked Survivor Corps for input — not for medical advice, but for guidance on dealing with the mental health component of the coronavirus.

Vicki Judd with her family.Courtesy Vicki Judd

Judd, who works in information technology sales, had six weeks of severe coronavirus symptoms and spent a week on a ventilator, and she has been seeing a therapist to process the trauma. Three weeks into her recovery, she suddenly got a cough, a headache and slight fever.

Terrified that she could be relapsing, she polled the group on how to stay grounded. Responses came flooding in: Call the doctor to see whether it could be allergies; do breathing exercises; recognize that it could be the result of anxiety, given everything she has been through. Judd's doctor ended up switching her allergy medications, and the symptoms went away.

The group was comforting from the moment Judd joined.

"It just made me sob and sob," she said. "It was relief, excitement, sadness that somebody else knows what you're going through."

Comparing symptoms and informing research

Others have sometimes found social media to be ahead of doctors' understanding of the disease.

Christy Canter in a hospital in March. Her oxygen levels were so low that her lips were turning blue.Courtesy Christy Canter

Christy Canter, 48, of Dallas, Georgia, was hospitalized twice in a week for breathing difficulties from COVID-19, and she got a rash shortly after she went home. The nurse she called said it was most likely a reaction to the medication she was given in the hospital. Curious whether others had gone through the same thing, Canter, a homemaker, asked the Survivor Corps group and was stunned when more than 100 people said they had and that it was also on their upper body like Canter's was — and at the same point in their recovery.

"The group confirms all the things you went through or that you sensed or felt," she said. "It makes you realize, 'OK, I wasn't crazy. I'm not the only one.'"

Berrent conceived of Survivor Corps as a service organization, and the group offers information on how and where to donate convalescent plasma, the antibody-rich blood product from people who have recovered from the disease, which is being infused as an experimental therapy into patients.

Bill Cudnyj.Courtesy Bill Cudnyj

Some members of Survivor Corps say they take as much comfort in reading others' stories as they do in sharing their own. Bill Cudnyj, 52, of Clifton, New Jersey, joined days after a 3½-week hospital stay, during which he came so close to death that he called his wife to share all his passwords and tell her his wishes for his burial. He is still on an oxygen machine 24/7 at home, but he is actively participating in the group.

"I like commenting, sharing, talking," he said. "It gets you through things, because holding them in really doesn't help."

Sympathy and survivor guilt

While the groups are overflowing with stories of triumph, not all the posts are positive. Among them are tragic updates from people informing the groups that their loved ones have died, often thanking members for their support.

They are heartbreaking for everyone, but for those who feared that they, too, would die, they can also bring survivor guilt.

"The older people obviously hurt my heart, but I'll tell you, the younger people are what make me feel guilt-ridden," said Judd, the New York woman who has been seeing a trauma therapist. "It hurts me."

Canter, of Georgia, has found that the best outlet for the guilt is in helping others. She has her first appointment coming up to donate convalescent plasma.

For her, it's personal: She recently found out that shortly after she was released from the hospital, the respiratory therapist who treated her had died of COVID-19.

"I don’t know if he got it from me or somebody else," said Canter, whose respiratory therapist died shortly after she left the hospital.

"I don't know if he got it from me or somebody else," she said. "It's just so many unanswered questions."

English, the single mother in Oregon, said the deluge of stories every day of those who are dying is overwhelming.

What has helped her the most is messaging friends she has made through social media: people in New York, Dubai and Italy whom she has dubbed her "virus buddies."

"The biggest thing with those three has been laughing and crying, just a release of energy and frustration and everything else," she said. "Depression is so bad with this."

She plans to keep in touch with the friends she has made.

"I'm hoping, at some point, to go visit all of them," she said, "and go give them a big hug."

Follow NBC HEALTH on Twitter & Facebook.