Read on Twitter
Here’s my new story about long-haulers who’ve had COVID-19 for months. I first wrote about them in early June, and much has changed since then. Notably, many are still sick. For some, it’s been 5+ months of debilitating symptoms. #LongCovid 1/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
Some changes are positive. There’s more awareness of long-haulers & more acceptance from docs. These changes were mostly driven *by long-haulers* who fought for recognition, led their own research, & supported each other, all while being very sick. 2/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
But early pandemic mistakes are STILL costing long-haulers dearly. Testing screw-ups in Feb/Mar meant many never got tested; in Aug, that means many are still being gaslit, & can’t get into post-covid clinics. (What about antibody tests? Read the piece) 3/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
The COVID-19 caricature—kills a few, “mild” for the rest—was sketched early in the pandemic, and then calcified. It kept long-haulers out of research studies. It brought them dismissal from employers. It hurts them still. 4/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
Every long-hauler I’ve talked to has a story about being dismissed & gaslit by doctors, who tell them they just have anxiety or stress. This medical gaslighting is worse for women & esp. WOC. It’s almost as bad as the symptoms themselves. 6/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
But media coverage means more long-haulers are finding docs who know about them & take them seriously. I can’t overstate the difference that makes. “If you listen to the population you’re trying to help, they’ll tell you what’s wrong,” one doc said. 7/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
Long-haul COVID has a LOT in common with ME/CFS, dysautonomia, & other similar illnesses. Those communities are offering wisdom & guidance. "It was like watching the roller coaster go up the hill, and only people like us knew that the track was broken.” 8/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
This is just the beginning. The pandemic is going to create a large wave of chronically disabled people. Will they be ignored as folks w/ ME/CFS have long been? Will their sheer numbers finally lead to change? The next months will be pivotal. 9/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
Note: Long-haulers are typically women, young, & formerly fit/healthy. They look very different from the typical portrait of a COVID-19 patient. Many young people think they’re invincible, but COVID-19 can flatten their lives for months, maybe longer. 10/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
This thread barely scratches the surface. Please read this piece. This is the most important pandemic coverage I do. After the first piece, I got hundreds of emails from people saying they finally felt seen. I hope this new piece continues that trend. Fin/ https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
(PS: If this is all completely new to you, you might also want to check out the first long-hauler story I did in early June: https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/)
