We All Need a Witness: A Conversation with the COVID Long Haulers Podcast

Welcome to season 4, episode 3 of A Friend for the Long Haul - A Long Covid Podcast! What was supposed to be a quick 10-to-15-minute chat turned into three hours. I am not sorry.CW: We do discuss topics such as medical trauma and gaslighting, the Faces of Covid Victims project, and the fear that wells up when folks in your support group don’t post for a while.I got to sit down with Emerson and Jessie from the COVID Long Haulers Podcast and at the end, I announced that I’m adopting them. We talked for so long that what you're hearing is just my portion of the conversation, and it still clocked in at an about an hour. That tracks.We talked about how both of our podcasts started: out of desperation, out of Discord servers, out of needing to find even one other person who understood what it felt like when plain water dehydrates you, or when your symptoms are so bizarre and so new that you don't have words for them yet. We talked about what it costs to do this work when you're homebound, bedbound, or running on borrowed spoons. And we talked about something that I think about a lot, which is what it actually means to be witnessed. Not fixed or reassured or told be positive. Just truly seen by someone who says: that sounds really hard.We clearly didn't want this conversation to end. I hope you feel the same way while listening to it.This is a Long COVID Awareness Month episode about grief, gallows humor, knitted activist vests, and the community that keeps showing up when everyone else kind of backs into the bushes like Homer Simpson.Topics covered:Long COVID community and patient-led advocacyIsolation, online support, and the limits of our abled friends and familyMedical gaslighting Grief, mortality, and bearing witnessPrivilege and representation in patient storytellingDysautonomia, POTS, MCAS, ME/CFS, and medication sensitivityCommunity-sourced treatment knowledge (we talk about meds that have and have not worked for us - always consult your doctor before trying anything new!)Co-hosting a podcast while chronically illRELEVANT LINKS:As a Linguist, I want to find the words to measure chronic illness by M. Corvi in The Sick TImesCovid Long Haulers Podcast Support Discord📞 The Long Haul Line: 720-432-9368, call or text anytime 📧 Email: [email protected]📬 Substack: f4lh.substack.comA Friend for the Long Haul is a low budget/high love production made by a disabled one-woman operation. If it means something to you, share it with someone whose earballs need it. You can support this podcast by buying long covid merch from my shop, buying your goods via my Amazon Storefront, or sending helpful stuff from my Amazon wishlist.