Doctors couldn’t help these COVID-19 patients with their endless symptoms.
Connecting with others online has brought “relief, excitement, sadness that somebody else knows what you’re going through.”
Jennifer English was sick, scared and confused. For two weeks, the Oregon City, Oregon, single mother 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 she had the coronavirus and worried her health might worsen, leaving her incapable of caring for her son. But in phone calls and virtual doctor appointments, physicians downplayed her concerns.
When 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 she had likely had a panic attack — even though English has no history of anxiety — and sent her home.
Two days later, her coronavirus test came back positive, and English was relieved to finally have a diagnosis. But she did not get better, and doctors’ suggestions — to rest and take a prescription cough medicine — did not help.
So she joined a Facebook coronavirus support group on a friend’s suggestion, and felt instantly 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.
“That was huge, because I felt so alone at the time, and nobody was helping me,” English, whose fever lingered for 31 days, said.
COVID-19 is as mystifying as it is isolating. Those who get it are often separated from their loved ones and seeking answers that the medical community does not yet have. As a result, millions of coronavirus survivors and family members of patients are turning to a different source for 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.
Her group now has more than 45,000 members.
“We have your back,” Berrent said. “We understand.”
By Elizabeth Chuck and Erika Edwards