When I had my yarn and knitting business, Knitcircus, we published a lot of knitting patterns. My friend and tech editor Elizabeth (from Notes from the Studio Substack fame) used to laugh when looking over new submissions. “Of course,” she’d say, “The designer is always a size medium.”
Naturally, when designing a new garment, people think of their own familiar dimensions first and write for themselves, then do the math to size it up and down. Sometimes the math can get funky, but that’s a story for another day. I think this witticism applies to illness, too. People tend to internalize their level of function as the norm. Of course, you can get progressively worse, or better. But in general we use that prism to generalize.
I’m acutely aware that some people with Long Covid have it way worse than me. People in my support groups have reported not being able to get out of bed without a days-long planning campaign, feeling nausea all the time or fainting on simply standing up. On the other hand, I’ve read articles by people who undertook multiple treatments to banish their fatigue after working for six hours a day or authors using dramatic exclamation points because a person lost their sense of taste for six months!
I can tell you that losing your sense of taste isn’t fun, (see my story about magically restored function following a vaccination) but would I trade it for losing my chest pain and tightness, brain fog and crushing fatigue and being able to go for a run? In a heartbeat.
Of course, there’s no hierarchy of suffering and we’re all in this together. I just am amused at how I roll my eyes at someone dramatically describing a life way more functional than mine, and imagine that people stuck in bed laugh sarcastically at my own focus with not being able to work or exercise when I can take my dog for a daily walk around the block. With a syndrome with more than 300 possible symtpoms, there’s no “typical” Long Covid patient.
And also, I think of myself as “medium sick” when I suspect objective measures say that a lot of people see improvement over five years and can still find ways to work half-time, while my situation remains stubbornly similar. I think that helps me continue my determinedly positive mental outlook.
Like most other aspects of chronic illness, the “size medium” allows me to normalize my own level of function, but probably obscures the logical conclusion that I’m sicker than a good chunk of people out there. It always leads back to the question of whether this is the best it gets before a slow, painful slide or whether symptom improvement or a research breakthrough is right around the corner.
I’m curious about how other people with longterm health issues feel about this. Is it fooling yourself to think your level of illness is the norm, or helpful, or just a way our brains wrap around our daily lives? If you’ve got an idea, please pop it in the comments!
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