Thank you ANGELICA 🌹, Bluey, Steve Carbone, and many others for tuning into my live video with Seth Werkheiser! Join me for my next live video in the app.
COVID gave me a social media problem
I wasn’t particularly active on social media before I fell ill with long COVID. Then, having to stay home and often stay in bed, Twitter became a way to connect with others struggling like I was. I also hoped it would help fill medical gaps.
What worked for others? What treatments should I learn about? What’s the answer?
At first, it helped. A lot. I saw others with similar symptoms and felt validated. I saw long posts “explaining” the science.
Spoiler: very few were explaining science. But between my cognitive injury and their manipulative language, I was usually being duped.
Soon, I realized Twitter wasn’t the solution. I was nervous, stressed, and exhausted after scrolling. I needed to set boundaries on my online consumption, but it was hard.
I wanted to meet people. I wanted to share my story. And once my Long Covid, MD podcast got going, I convinced myself I needed to stay online.
That isn’t true.
Social Media Escape Club
When I learned about Seth Werkheiser’s project, Social Media Escape Club here on Substack, I exhaled a little. Seth encourages artists and creatives to engage with one another, their audience, and their business offline. At least, off the usual social media platforms.
While Seth’s message isn’t directly about illness, a lot of what he talks about overlaps with our experience in the long COVID space. The feeling that being on socials is an obligation; the fallacy that it has all the answers, and that you’ll miss out if you don’t stay plugged in; the idea that it’s real connection.
What can we do instead?
Use social media with intention and with agency. Curate your feed, limit your use, and reach out! I’ve certainly made long COVID buddies online, and they’re now part of my IRL social support system.
Seth still uses the internet for organic connection. He hosts Zoom events for creatives. Camera-on, camera-off, engage or lurk, it’s up to you. And importantly, in these meetings and even on Substack, he shares what he’s noticing. What he likes, what he doesn’t. All of that encourages discussion and connection.
So! We both challenge you to say hi to someone online (safely, of course). Comment on a comment, send a casual DM, be brave and share your experience or opinion. All of these are a type of invitation and can lead to more meaningful connection than endlessly scrolling.
Seth and/or I are an easy place to start.
