About

This is what my life with Long Covid feels like.

(At least, I think, because we don’t have a clear understanding of its mechanisms, and as of now is a diagnosis by elimination.)

I was infected in December 2022, as a fully-vaccinated, relatively-healthy, young-ish adult. I have one of the milder reckonings of Long Covid: I can leave the house (sometimes, only when the weather is mild and pain only moderate) and I can draw (sometimes, ofc). I share these in part for those of us who cannot.

Post-viral illness is not new, and I am thankful to those who have held lights in the darkness for decades. At the bottom of this page are links to learn from some of those people. Be curious, and please, be even more kind.

Why illmarks?

1. People who know the severity and diversity of LC symptoms tend to take more precautions to avoid infections & help protect others.

2. Many People with Long Covid struggle to articulate the diversity and severity of our symptoms (or to be heard when we do).

Helping those two things (especially number 2) is why I have been using my very limited energy for Illmarks.

While creating these art pieces and managing this website are immensely meaningful to me in reconnecting with my body, I cannot overstate how hard it is to feel so disconnected from the visible parts of the planet’s lack of handling our ongoing pandemic.

I’ve had a couple of People with Long Covid (pwLC) tell me they shared a piece or two from this site with their loved ones who struggle to understand, and that means the world to me.

Easy ways to show solidarity with 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”

2. Additionally:
– Advocate for and take efforts to improve HEPA and MERV13+ air filtration of 6+ air changes an 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”.

If you’d like to support me and my work:

I am out of work due to long covid and could use any/all help, no matter how small. Sharing this blog &/or my ko-fi is hugely helpful.

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)

Long Covid and Related Conditions

– MEAction & Long Covid (Website, on ME & LC)

– 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)