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.
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.