Long COVID stigma adds insult to injury

It's weird having an illness a lot of people simply don't believe in

August was not a pleasant month for me.

I went into a weeks-long crash, unable to do much of anything but lie in bed with my migraine cap on, reflecting on what I wish had gone differently over the last several years. Sometimes I think about the week I caught the virus, but more often I think about life before the pandemic entirely. A world with no virus, I imagine. Some random combination of events strings together differently, back there in the fall of 2019. It all works out the way it didn’t. SARS-COV-2 never infects a human, or never makes it to this side of the Pacific. What would life be like?

I recently wrote about how much time I spend wandering around in my memories, revisiting friends, concerts, parties, bars, even jobs and trips to the gym. It’s strange though; even old photos have an air of doom about them. Like there’s a ticking clock over my head. 18 months until everything changes, I think. I didn’t know.

My crashes are hard to describe to someone who hasn’t experienced them. Yes, the migraines are bad. During this crash just past, I had a migraine that lasted six days after drinking a Thai iced tea (my body hates caffeine now, thank you COVID). But the migraines aren’t really the “crash”. Some people have described a PEM crash as a “hangover” or “flu” feeling, which I’d say is broadly accurate. The nearest I can get is to say, you feel like you really, really need to lie down. You feel…. sick. It’s a full body, generalized, sick-ness, from head to toe. And when it gets bad, you won’t even be able to sit up, not for more than a second.

Today, I am sitting up. Over the last five days or so, I’ve finally been able to sit up after three weeks of lying down. I spent a few hours yesterday sitting up. I’ve spent a couple hours today sitting up. And I’m doing okay. Why? No one knows. Not me, not my doctors, not anybody’s doctors. Not even the researchers being paid to study Long COVID and (hopefully) working on figuring it out. It’s a lonely feeling.

It’s a middle-of-the-ocean-no-life-preserver sort of feeling. I’m out here beyond where science has mapped. Here be dragons.