Trailheads to Learn More
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)
Chronic Illness
– A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles (Article)
⁃ 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)
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.)
– The Hermeneutical Injustice of ME: Why the right words don’t exist, and how we can find them (article)
– 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)
– The Sick Times (Journalism, Website/Newsletter)
- Missing the gig: When your subculture leaves you behind with Long COVID (article)
- This is what it feels like: Artist visualizes Long Covid symptoms (article, It’s me!)
- “Unspooling”, an excerpt from Alice Wong’s Disability Intimacy (short essay about Disabled Love)
- Two Long COVID-focused performances show the power of art for reflection and solidarity (article, podcast)
- “Long COVID Mode”: Seeing the crisis through games (article)
– Hummingbird ME Ability Scale (PDF, Google Drive)
– ‘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)
⁃ Long Covid Survival Guide (Book, Audiobook, contains a variety of short essays, many by patients)
– How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhardt (Book, ME/CFS and Cancer, get the second edition)
– Clearing the Fog: From Surviving to Thriving with Long Covid by James C Jackson, PsyD (Book, Audiobook, most helpful for cognitive symptoms imo)
– Illness as Metaphor and AIDS and its Metaphors by Susan Sontag (Book, Audiobook)
– All the Disability Visibility Books edited by Alice Wong (Books, Audiobooks)
– Rest is Resistance by Tricia Hersey (Book, Audiobook, not health specific, but it helped me a lot as someone with an energy disorder)
– Laziness Does Not Exist by Devon Price PhD (Book, Audiobook, not health specific, but it helped me a lot as someone with an energy disorder)
– The Body is Not An Apology by Sonya Renee Taylor (Book, Audiobook, not health specific)
– Wintering: The Power of Rest and Retreat In Difficult Times by Katherine May (Book, audibook, not health specific)
– Covid 2024 Zine by Hazel Newlevant (Comic, Zine, Free)
– Why We Mask: It’s not just a Cold (Comic, Zine)
– Memento Mori by Tiitu Takalo (Graphic Novel, Cerebral Hemorrhage)
– Brittle Joints by Maria Sweeney (Graphic Novel, Bruck Syndrome)
– Notes from a Sickbed by Tessa Brunton (Graphic Novel, ME/CFS)
Other Post-Viral & Medical Art & Creativity
– Lia Pas’ ME & Anatomy Embroidery Art also audio compositions!
– Severe ME Artists Project (2025)
– Kara Jane sings about Severe ME
– Pillow Writers and Pillow Writers En Español, Soft Pillows, and The Annex
– Andrew Gifford’s ME Photography
– A Gesture Makes the World album by Evan Erickson who runs Gifts for ME
– People Making Creative Projects About ME/CFS (I’m one of the featured artists!)
Tools
– I highly recommend using something to track your symptoms during & at least a month after an acute infection, or if you have a chronic illness already. 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, especially if you don’t have difficulty managing your energy. 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.