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June 8, 2020

Covid-19 survivors, 'shunned' by their communities, are finding support (and guidance) in online groups

Daily Briefing

    A number of Covid-19 patients and survivors have reported feeling isolated and ostracized by their communities, even after they've recovered from the disease, and many are turning to online support groups to cope.

    How Covid-19 will impact behavioral health services

    Covid-19 stigma

    When Elizabeth Martucci and her 11-year-old son both recovered from Covid-19, the disease caused by the new coronavirus, Martucci said she wanted to tell everyone that she "'had this [disease], and I'm OK,' just to show people it's not a death sentence."

    But to Martucci's surprise, instead of giving people hope, people appeared to be afraid of her, she said, noting that one neighbor even tripped over a curb while trying to run away from Martucci and her son as they walked by.

    "It didn't even occur to me—being shunned. You're looked at as a contagion, versus as a survivor," Martucci said.

    Samantha Hoffenberg similarly survived Covid-19, but she had planned to stay away from her family even after her recovery, as her father had died from the disease in April. But on April 23, Hoffenberg's building caught fire and she was hospitalized for smoke inhalation. During her hospitalization, Hoffenberg also experienced a series of panic attacks.

    A social worker at the hospital called Hoffenberg's family to let them know that Hoffenberg was virus-free and she wanted to see them, but her family refused.

    "I have never been in such a sad dark place after that happened," Hoffenberg told the Times. "And my own family is that scared of me that they are not even able to see through the fact that I am alone through this."

    Covid-19 survivors, in particular, say the stigma they face feels especially difficult given the nationwide conversation on how people who've recovered from the disease will be a key part in helping to further researchers' understanding of the new coronavirus and develop treatments for Covid-19, as well as in reopening nonessential businesses across America.

    "There is a dichotomy between feeling like you can go give your plasma to save other people's lives, but feeling like you're an untouchable," Sheryl Kraft, a health journalist and Covid-19 survivor, told the Times. "We can go back into society, we can donate plasma, we are very valuable. But to people who are afraid of catching [the new coronavirus], we are like pariahs."

    How patients and survivors are coping

    To cope with the stigma and isolation that comes with having and surviving Covid-19, many patients have turned to online support groups such as Body Politic Covid-19 and Survivor Corps.

    "You're talking about people who are at the scariest point in their lives," Diana Berrent, a Covid-19 survivor and founder of the Survivor Corps group, said. "They're home, they're alone, they're sick, they're scared, and they're generally not under much medical supervision."

    Writing in Vox, Fiona Lowenstein, founder of Body Politic, said her support group helps members in a number of ways, including helping them validate some of their experiences with lesser-known symptoms of Covid-19 by connecting with others.

    Likewise, the Washington Post reports that online groups have helped Covid-19 patients and survivors find tips for easing the symptoms and long-term effects of the disease. Bonnie Chwala, a Covid-19 survivor, told the Post that suggestions she received from other members of Survivor Corps, a Facebook group for Covid-19 patients, helped make things "a little easier to navigate" as she was dealing with painful symptoms of the disease. "It was comforting to have a plan," she said.

    Lowenstein wrote that the group also helps people analyze recommendations from health officials and new data that's available on the new coronavirus and Covid-19 worldwide. For example, Lowenstein wrote that one member of the group was told by her doctor that receiving a negative test result for the new coronavirus meant she was likely free of the pathogen.

    However, the member then learned through the support group about the prevalence of false-negative test results, which led her to be more cautious about her infection status and wait until her symptoms entirely subsided before no longer self-isolating.

    The groups also help survivors fight bias and discrimination in the health care system, especially for people of color and women, who are "more likely to have their symptoms dismissed by doctors," Lowenstein wrote.

    For instance, Lowenstein wrote that Michelle Lemus, a member of the Body Politic group and a Covid-19 survivor, said her experiences seeking care for the disease left her physically and mentally exhausted after providers at two facilities dismissed her symptoms, but being a part of the Body Politic support group helped her get through it.

    "Knowing I wasn't alone in my symptoms and experiences is what kept me going," Lemus told Lowenstein. "I'm so grateful to have found this group. They were way more helpful than any doctor I've spoken to" (Nir, New York Times, 5/20; Lowenstein, Vox, 5/21; Shulman, Washington Post, 5/23).

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