In the three months since Dashauna Ballard of Tuscaloosa, Alabama, returned from the coronavirus, she has learned not to report that she was ever ill. Some people give their suspicion appearance when they find out they had COVID-19; some assume she got it because she did not take proper hygiene measures; and recently, an acquaintance from the church implied that Ballard, 29, caught the virus as punishment for sins she committed.
“People act like you did something to catch it, or you did something wrong, and that’s why you did it,” said Ballard, an academic accommodation specialist for university students. ‘I feel like I have a scary letter on my chest. ‘
At a time when they need it most, many coronavirus survivors find that their support system has nothing to do with them. After recovering from the illness, they now face a new challenge: the stigma of family, friends and colleagues.
At the height of her illness, Ballard struggled with shortness of breath so severely, it landed her briefly in a hospital for intensive care. When her symptoms disappeared, she was retested for COVID-19 – twice – for her own peace of mind before stopping self-isolation. Both follow-up tests were negative, but close friends were initially reluctant to go anywhere with them.
“I do not blame them for that, but I felt I was being punished a little bit and I did not really know how to deal with it,” she said. “You feel like no one really understands what you’re going through.”
Ballard and others in her position said fears of people made sense, seeing the unknown about the virus and the continuing edict of top public health officials to exercise social distance. But the pain these survivors experienced went beyond standard health precautions: Some had friends who sought out others but still refused to see them.
Experts say such a stigma is not surprising.
Dr Seema Yasmin, director of the Stanford Health Communication Initiative and a clinical assistant professor in the Department of Medicine at Stanford University, called it an ‘unfortunate and predictable’ response to a new disease.
“Stigma is terrible on several levels: It is harmful and terrible for those people who experience it, but it is also a public health crisis because it gets in the way of public health interventions and response to epidemics,” sei se.
Yasmin witnessed stigma in West Africa during the Ebola epidemic, but said it was a phenomenon not limited to a particular culture, adding that there are similarities between how COVID-19 survivors now become treated and the decades-long stigma against HIV and AIDS patients the United States.
“People are judged by this microscopic pathogen in their body as opposed to getting the care and support they need.”
The consequences could be wide-ranging, she said. With the coronavirus, stigma has hindered contact tracing efforts in the U.S. because of some COVID-19-positive individuals who feel embarrassed to share their test results, and contributed to the difficulty of containing outbreaks.
“We just have so many examples of this,” Yasmin said. “People are judged by this microscopic pathogen in their body as opposed to getting the care and support they need.”
“Why do you treat me like I’m a leper?”
For some, the stigma feels not only personal but also illogical.
Patti Kirk-Byrne, from Lake Carmel, New York, was expecting a warm greeting when she returned to her job as a hospital CT scan technologist after being ill with the coronavirus for about six weeks. Instead, some of her colleagues refused to be in the same room as her for a long time, despite the fact that she was wearing a mask. This confused her, given her line of work.
‘They’ve all X-rays. They are exposed to COVID patients on their shifts, “said Kirk-Byrne, 52.” Why do you treat me like I’m a leper? “
Similar scenarios also play out outside health care settings. Sadie Nagamootoo, 44, of Valley Stream, New York, was diagnosed with the coronavirus in April and is still struggling almost 140 days later with symptoms including shortness of breath and a sore throat. She feels her status as a so-called COVID-19 long hauler has made her friends even more inclined to avoid her, even though she has tested negative multiple times since May 7th.
Last month, a friend who was stopping by Nagamootoo’s sister’s house to say hello abruptly changed her mind when she found out Nagamootoo was there. The friend said she was worried she could catch the coronavirus and bring it home to her relatives, despite negative tests from Nagamootoo.
“I tried to reassure her for 10 minutes, but at the end of the day, you can not blame anyone for failing in the family,” said Nagamootoo, a personal trainer. Still, it made her feel like she had the plague, she said, and sent her into a depression that she could not shake for a few weeks.
“People will say things, ‘You never know, you may still have it in you,’ she said.” It makes you psychologically crazy because you start thinking and asking if you can really do something impossible. transmit to someone, even if there is no active virus in you. “
Cases such as Nagamootoo’s, in which symptoms are present many weeks after the initial infection, do not necessarily mean that the person is still infected, Yasmin said, adding that researchers are still trying to determine what causes longer symptoms.
“They may suffer symptoms due to damage the virus did before it was eliminated from their body,” she said.
And there is growing evidence that those who have recently recovered from the coronavirus may be among the most immune: On Friday, the Centers for Disease Control and Prevention reported that recovered COVID-19 patients are protected from reinfection for at least three months, suggesting that they do not need to be quarantined if they are exposed to someone with a confirmed case within that time frame, as long as they do not develop symptoms.
‘Why are you afraid of me? You should be afraid of the people who walk along with it and may spread it. ”
Many survivors who are exaggerated feel that they are among the safest people to be.
‘Why are you afraid of me? You should be afraid of the people who walk by and can spread it, ”said Kirk-Byrne. ‘I just do not understand. I’m not actively sick. ”
Lost friendship
Seeing the lingering questions about the coronavirus, Yasmin said no one would have to blame on the side of caution, but she urged people to check in on friends and relatives who have COVID-19 in ways that feel safe, like with a phone call.
“Just the simple act of asking someone what their needs are, what you can do to take care of them in a very difficult time, that is a simple gesture to achieve,” she said.
That kind of support was a lifeline for Scott Emmons, 58, of Suffield, Connecticut. When he, his wife and her son all got the coronavirus in March, his friends online offered overwhelming support. Some even dropped food off weeks in front of the family door.
Her kindness meant a lot to Emmons, the director of therapeutic recreation at a rehabilitation facility hard hit by the virus: More than 60 residents died of it, as well as two staff members, including Emmons’ assistant director.
“I think the hardest part was that you could not give anyone a hug,” he said. “It has – emotionally, physically, mentally – taken a huge toll on me.”
Others did not feel supported. In Vacaville, California, Amy Delahoussaye-Demartini and her 7-year-old daughter, Giana, got into a rift with close friends when they became ill with the coronavirus in July. Their symptoms started to be mild and seemed to be just cold, but Delahoussaye-Demartini was tested for COVID-19 to be just safe. While they waited for the test result, Giana’s best friend, with whom she had been playing since the lockdown restrictions in California were released, asked to come over; Delahoussaye-Demartini explained to the friend’s mother that she was waiting for COVID-19 test results and left the decision to her.
The mother chose to send her children over to play with Giana, and then became furious when Delahoussaye-Demartini, a nurse, called a few days later to tell her the bad news: The test had returned positive, and her family now had to quarantine. Her friend’s family did not get sick, and just a week later they moved on to Delahoussaye-Demartini to fly to Mexico for a vacation.
“What amazes me is the hypocrisy of people’s behavior when it actually hits your circle,” she said, adding that the other family did not control her and her daughter when they were sick. “There was no compassion or empathy, not even a phone call to see how we were doing.”
Ballard, the Alabama accommodation specialist, hopes that by sharing her experience, it will help change the public perception of those who have the coronavirus.
“People do not understand that dealing with the symptoms is a lot, and then the recovery process is a lot too,” she said. “Just because you test positive, does not mean you did something wrong.”
