Long COVID and the Rise of Digital Patient Activism
A Bit in Current History
Good morning from snowy DC! I wrote a commissioned piece for Current History about Long Covid activism, situating within a broader history of embodied health movements, from HIV to breast cancer. It’s short and open access, and I think many readers will find it interesting.
The abstract is posted below but please read the piece on the journal’s site. Happy snow day for those who are enjoying it!
Abstract
HIV patient activism has had a profound influence on the embodied health movements that followed it. Complex chronic conditions—for which there is no verifiable test or clear treatment program—have been called “illnesses you have to fight to get,” in part because patients struggle to convince doctors to take their pain seriously enough to give a diagnosis. This essay puts Long COVID into context with other embodied health movements, highlighting how Long COVID activism built upon previous social movements, and how digital networking and viral social media messaging set it apart.
Excellent and vital piece, Emily. Our long hauler patient activism definitely needs its documentarians, and I’m so grateful that you tackled this. It’s a huge topic with so many layers.
One thing to add is the role of my friend and early activist Amy Watson. She coined the term “long hauler” as a reference to LC patients in April 2020. It was a saying on a hat she wore when she went to get tested after she wasn’t recovering. Soon after, she started one of the first Facebook groups for long haulers that also blew up quickly, like the Slack channel, and created community and connection for those of us felled by this brand new mystery illness. I always think of Amy and Elsa as the first two who named us, albeit slightly differently.
Great commentary in the importance of advocacy in developing a better understanding of Long Covid support. We still have much to do.