Online communities provide support for COVID-19 survivors with lingering, possibly-permanent symptoms

July 8, 2020 5:18 AM

Christina Lorey,

Posted: July 8, 2020 5:18 AM

Updated: July 8, 2020 8:16 AM

by Christina Lorey

MADISON, Wis.– The World Health Organization estimates that most mild cases of COVID-19 should resolve in two weeks. But a growing number of people, even those with mild cases, report feeling symptoms after six, eight, and even 12 weeks.

Doctors are seeing permanent lung scarring in people who’ve developed and recovered from even mild cases of covid-related pneumonia. They’re also monitoring heart inflammation, irregular heartbeats, and worsening kidney and liver function in recovered patients. In extreme cases, survivors who had long intensive-care stays need oxygen therapy or dialysis at home. Some also develop a condition called post-intensive care syndrome, which can include persistent muscle weakness and memory problems.

While after-effects like these are extreme, they are not an exclusive group of symptoms. Everyone’s experience with the coronavirus is different; even people with nearly asymptomatic cases of the virus are now battling a complicated post-recovery process, filled with new symptoms from severe sinus pain to rashes and hives. The virus is new, so these symptoms are not yet recognized by the CDC.

COVID-19 survivors are now turning to each other to help validate their experiences. New support groups are popping up online to allow people living with or recovering from the coronavirus to discuss lesser-known symptoms and crowd-source best practices from health experts around the world.

Although this virus is new, communities like this aren’t. During the AIDS crisis, global groups stepped in to offer peer counseling services and telephone hotlines. Today, those services have moved online.

If you or someone you know is still recovering from COVID-19, you can join groups like the Survivor Corps or the COVID-19 Support Group (have it/had it), which are active on Facebook.

Recovering patients say these groups help them feel more validated and less isolated. For example, some of the most discussed topics in online communities right now are neurological symptoms, GI issues, and skin sensitivity, which are not officially recognized by the CDC. Medical experts say that’s not because they aren’t happening; they just don’t have enough data.