Disability and Chronic Illness

I'm providing this very small account of my experience with disability and chronic illness solely for the purpose of visibility. There is no inspiration here. I have no advice for you. 1

I've seen rheumatologists, neurologists, orthopedists, pain management specialists, and osteopaths. None of them know what exactly is wrong with me, so at first they labeled it fibromyalgia and now they suspect it's Chronic Inflammatory Response Syndrome (CIRS). Whatever you call it, my nervous system interprets most signals as severe pain which causes my muscles to lock up which results in actual damage.

I've struggled with insomnia since I was a teenager. I've had chronic pain since around the same time, but I didn't realize it because, at that point, whenever I told a medical professional or other adult about the pain and trouble sleeping, they said it was growing pains or told me I was exaggerating.

Presumably COVID-19 triggered whatever was always there into something worse.

Understanding of the lingering effects of COVID-19 is growing rapidly, but development of treatment has barely begun.

Sometimes I walk with a cane. My partner often has to act as my caretaker because, for example, getting out of bed will lead to my back seizing forcing me to lie flat on the ground for a couple hours. I don't trust myself to operate many forms of machinery. I'm reminded of my limitations every day.

  1. I wish I did, but these matters are too individualized for me to even begin. I'm too tired.↩︎