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How COVID-19 long haulers created a movement

People in this story

Medium, November 2020

Hannah Davis’ “day one” is March 25. It’s the day she first started experiencing symptoms of Covid-19. That evening, she tried to respond to a text message from a good friend and discovered she was struggling to read it. About an hour later, she took her temperature and had a fever. She’s now reached nearly 200 days of symptoms and is considered a Covid-19 long hauler or someone with “long Covid,” as she and many others call it.

“Day ones” have gained significance within the Covid-19 community, and people in the long Covid-19 support group that Davis is a part of like to share them. “When you meet another person who has your day one, you feel this camaraderie with them because you know they’ve been on the journey basically the same way you have,” she says.

There are tens of thousands of people around the world who consider themselves Covid-19 long haulers. These are men and women whose symptoms of the illness have lasted months past when they were expected to remedy. The symptoms are similar in many ways to the kinds of full-body symptoms that people with shorter periods of the disease are experiencing, too — often debilitating sickness that affects the body from head to toe. For Davis, a Brooklyn-based artist and researcher, the symptoms have been mostly neurological. She says she’s dealt with memory issues and hand tremors, both of which have greatly improved but still affect her daily life. For Lauren Nichols, another person with long Covid-19, the symptoms range greatly, but some of the most severe are gastrointestinal, including daily bouts of nausea and diarrhea (in addition to daily fatigue, memory loss, and headaches).

A growing acknowledgment that SARS-CoV-2 can cause symptoms that linger for weeks or months can be credited in large part to the awareness work of Covid-19 long haulers themselves. Exactly how long the effects can last is unknown, but many people in Covid-19 support groups like Body Politic — a queer, feminist wellness collective turned Covid-19 hub that both Davis and Nichols joined in April — have dealt with symptoms for several months. Body Politic now has over 18,000 active members in over 30 different countries. Other similar support groups on Facebook have tens of thousands of members.

Continue reading at Medium.

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