In early December, just as the third wave of the coronavirus was gaining steam across the United States, comedian Michael Rapaport took to Instagram to make a simple, characteristically expletive-laden plea to his followers: If you get COVID-19, post about your symptoms.
“Anybody with a platform, I am begging you, please if you have coronavirus if you just had coronavirus, put the fucking camera in front of your face and share your story,” he said, emphasizing the need for athletes, actors and other public figures to share.
“People don’t believe that this shit is real, some people know that it’s real, if you have coronavirus… at this point, I am begging everybody to share your story,” he continued. “Do you feel great? Do you not feel great? Was it a cold? Was it not a cold? How did it affect you?”
“There ain’t no fucking ‘I’ in team,” he quipped, “but there’s a giant fucking ‘I’ in COVID.”
While some celebrities have shared about their illness, many people, famous or not, who contract the coronavirus don’t take that kind of team outlook. They keep their diagnosis under wraps, particularly on social media. And there are understandable reasons for choosing silence.
But hopefully, more people will start telling their stories. Because to get through this pandemic, we need to hear them.
Why some people don’t disclose they have COVID-19
Unfortunately, catching COVID-19 has been stigmatized. People say they’ve been ghosted by friends after getting the virus. Some say they’ve lost their job after disclosing positive test results.
This kind of shaming and finger-pointing isn’t new. In the past, stigma has surrounded other epidemics ― especially HIV-AIDS ― but also more common health issues like smoking, substance use disorders and obesity.
Some people try to reassure themselves that those who got COVID-19 must have “done something wrong,” said Shane G. Owens, a psychologist and assistant director of campus mental health at Farmingdale State College SUNY.
“Because staying healthy involves things like washing your hands and not touching your face, some people may think those who get sick are ‘unclean’ or irresponsible,” he said. “People have similar beliefs about those who are overweight or have substance abuse problems.”
In the midst of social distancing, the last thing anybody wants is to feel further removed or pushed away by friends.
“Not talking about our experiences with COVID-19 is a way to avoid loneliness, even if it’s more helpful to talk about it,” Owens added.
But now that community spread is occurring across the country, it’s incredibly easy to catch the coronavirus, even if you’re trying to be as safe and hygienic as possible.
“The truth is that there are no guarantees except for remaining completely isolated,” Owens said.
Yet instead of “I tested positive” posts, our social media feeds send us scenes of people flouting stay-at-home guidelines and taking tropical vacation pics. These envy-inducing posts sharply contrast with the somber headlines that warn us about the uptick in cases.
When they don’t see others discussing their experiences with the virus, it’s easy and tempting for COVID-19 doubters to downplay its severity: “No one I know has gotten it.” “It’s just like the flu.”
But the first might not be true ― and the second is definitely false for all too many people.
Why you should share your COVID-19 experience with others
Bjonda Haliti, a 22-year-old from Los Angeles who tested positive in March, posted about her symptoms when hardly anyone else was doing it.
At the time, hospitals in the LA area were ill-prepared for the flood of COVID-19 cases on the horizon. Securing an appointment to get tested for the virus was an uphill challenge. When Haliti looked online for anecdotal first-person stories to see if her symptoms matched up, she didn’t find much.
“It was a terrifying feeling not knowing what to expect, but I knew I had to care for myself the best way that I could,” she said.
Haliti was eventually able to get tested. By the time she received a positive result six days later, she was starting to feel better. With some hesitance, she decided to tweet about the worst days of her illness to show that the virus was no joke.
“There was so little information out there then,” she told HuffPost. “I thought it was important to share every last detail with the world in hopes of educating, bringing awareness and saving lives.”
Kat Powers, who lives in Boston, also laid out her experience with COVID-19 in a Twitter thread in March. Powers urged people to take the virus seriously, even if they were generally healthy. She didn’t skimp on the gory details.
“The sore throat is sort of like smoking a pack of menthol cigarettes when you’re already a little sick. And you’ll feel very tired,” she wrote. “You’ll be surprised how much your eyeballs hurt, and ice packs on your eyes won’t help.”
Then, Powers explained, there’s the chest pressure. “Ever play with a kid and he stands on your chest? It feels like a 50-lb kid is standing on your chest,” she wrote. “You’re wondering how you deal with the bloated stomach, the chest pressure, your legs and back hurts, with a stabbing headache. Light hurts.”
Powers told HuffPost the worst of COVID-19 lasted for six weeks in her case. Months later, she’s still fielding questions in her DMs from people who suspect they might have the virus and are looking for guidance.
“I have random folks reaching out as they Google symptoms and find my thread,” she said. “My experience is that for a lot of folks, when they have the misfortune to get it, they reach out.”
Twitter threads like Powers’ and Haliti’s ― or Instagram stories detailing symptoms ― are not just easily digestible for readers; they also put a human face on the rising numbers of cases. They drive home the severity of COVID-19 in a way that statistics can’t, said Kirsten Hokeness, a professor and chair of the department of science and technology at Bryant University.
“Data and new developments on COVID come out so rapidly, it can be overwhelming,” she said. “But people can instantly connect with these anecdotes. They raise awareness of the infection and its potential impacts. They’re particularly important for young adults who use social media as one of their sole sources of information and who have been somewhat reckless due to underestimating the risk of the virus.”
That’s exactly why Justin White decided to post about his symptoms in March: He was sick of reading messages from disbelievers and doubters on his Facebook and Twitter feeds. And he was sick with the coronavirus.
“Actually, while I was at the hospital, someone on my timeline posted a picture of their beer and said ‘Fuck it, I’m having a beer’ at the bar,” he told HuffPost.
White struck a different chord with his tweet: “I have it. Don’t sleep on this thing people. I’m a very healthy type I diabetic. My body is fighting it very well but it’s kicking my ass. Don’t be a moron. Stay home!”
He also outlined his various symptoms, day-by-day. That post quickly went viral.
“I posted my story for that person I knew at the bar,” the 39-year-old said, adding. “I went from 25 followers … to over 11,000 at one point.”
The acute phase of White’s illness lasted 30 days and he’s still struggling with long-term coronavirus symptoms. He encourages others to share their COVID-19 experiences, although he gets why some people are apprehensive about doing so.
“Most people are very private and do not want to be ‘famous’ in any way,” he said. “And at least earlier on, there was this growing stigma to it because hardly anyone had it. It was very reminiscent of early HIV infection.”
If you decide to share, consider describing your long-term symptoms, too ― not just those you had at the height of your illness. This can be especially validating for long-term COVID-19 survivors, whose symptoms are generally less discussed in media coverage, as well as useful for researchers and doctors, who are still trying to figure the virus out.
It’s hard to put yourself out there, White acknowledged, but entirely worth it. “I think that people took COVID seriously after reading my post,” he said. “It feels really good to know that you were able to help so many.”
Experts are still learning about COVID-19. The information in this story is what was known or available as of publication, but guidance can change as scientists discover more about the virus. Please check the Centers for Disease Control and Prevention for the most updated recommendations.