Easy ways to show solidarity with people with Long Covid (pwLC)
1. Wear a mask
– Sure, a well-fitting, high filtering mask is best, but seriously, being visible in any mask is HUGE
– Seeing others in masks means we feel less alone, and yeah, a lot of us feel pretty damned alone right now
– It also means we are less likely to be targeted with exhausting harassment during our “rare public appearances”
– Pick a few places to start out of solidarity. Matt McGorry recommends medical offices, grocery stores, and while on traveling/transit, and I agree.
2. Additionally:
– Advocate for and take efforts to improve HEPA and MERV13+ air filtration of 6+ air changes per hour
– If you’re able, get updated booster vaccines
– Advocate strongly AGAINST any form of mask bans
– If you’re USA: support the passing of the Long Covid Moonshot
– Be a good ally! Speak up that Long Covid is real, and that we need interventions including financial and social support
2024-7-17: A previous version of this page used the title “this is what my fight with long COVID feels like” but I have updated it to eschew the military metaphor of illness, as Susan Sontag discusses in “AIDS and its Metaphors”.
Trailheads to Learn More:
Chronic Illness
⁃ Jen Brea: What happens when you have a disease doctors can’t diagnose (Video, TED Talk and Transcript)
Jen Brea has ME/CFS, one of the common post-viral conditions which Long Covid has much in common with. She co-founded ME Action, alongside Beth Mazur (Rest in Power).
⁃ Brianne of No End In Sight: Disease Begins Before Diagnosis (Video, TEDx Talk and Transcript)
Disability Justice
⁃ Granite & Sunflower: What is a Disability? (Blog Post)
⁃ Sins Invalid: 10 Principles of Disability Justice (Website)
– The Social Creatures: The Social Model of Disability (Website)
– The Taoist: People with Disabilities: A Definition (Medium Article)
– “Unspooling”, an excerpt from Alice Wong’s Disability Intimacy (Article)
Long Covid and Related Conditions
– MEAction & Long Covid (Website, on ME & LC)
– The Disabled Ginger’s “Welcome Guide” Articles:
– Living Life Upside Down – An Intro to POTS and Dysautonomia
– When You’re Allergic To Everything and Nothing, that’s MCAS
– It’s Time to Throw Away the ‘Coulda, Woulda, Shouldas’ and Practice Radical Rest
– Indefinitely Ill, Post-Covid Fatigue (Blog, from someone with post-viral illness talking to people who might have Long Covid. I wish I read this sooner.)
– Long Covid Physio (Website with text, short videos, infographics)
– Mast Attack (Blog, on Mast Cell Conditions)
– Jodie Ettenberg’s Mast Cell Activation Syndrome Resources (Blog, on Mast Cell Conditions)
– DiNet (Website, on Dysautonomia and POTS)
– How to Get On (Blog, on Disability Support Systems)
– Hummingbird ME Ability Scale (PDF, Google Drive)
– The Sick Times (Journalism, Website/Newsletter)
– ‘I was in denial about it’: actor Matt McGorry on having long Covid (Article)
Articles with Potential Paywalls
⁃ Mike Mariani for The New Yorker: A Town for People with Chronic-Fatigue Syndrome (Article, Paywall Likely)
⁃ Giorgia Lupi for the NYT: 1,374 Days, My Life with Long Covid (Visual Article, Paywall Likely)
Zines, Books & Graphic Novels
– The Covid Safety Handbook (Book, Audiobook)
– Covid 2024 Zine by Hazel Newlevant (Zine, Free)
⁃ Long Covid Survival Guide (Book, Audiobook)
– Laziness Does Not Exist (Book, Audiobook)
– Memento Mori by Tiitu Takalo (Graphic Novel, Cerebral Hemorrhage)
– Notes from a Sickbed by Tessa Brunton (Graphic Novel, ME/CFS)
Other Post-Viral & Medical Art
– Lia Pas’ ME & Anatomy Embroidery Art (also audio compositions!)
– Andrew Gifford’s ME Photography
– People Making Creative Projects About ME/CFS (I’m one of the featured artists!)
– This is what it feels like: Artist visualizes Long Covid symptoms by The Sick Times (It’s me!)
Tools
– I highly recommend using something to track your symptoms. The way brain fog/brain injury effects our cognition, it can be even harder than normal to keep a sense of how you’re doing and how to best pace yourself to give yourself a better quality of life. I use the app Visible, which is by & for people with chronic illness. It is free for basic symptom tracking, and is very easy to set up. They also partner with occasional research projects that are only ever opt-in, and do good advocacy & education work.
If you want to incorporate a wearable and get real-time pacing notifications, there is a paid option for Visible. My referral link will get you & I both $20 off, but I think the free version is still excellent so no pressure: https://join.makevisible.com/68284299c4dc3e
The greatest trick ever pulled was making people think there was a difference between themselves & those who are at risk.