Long COVID is the common name for my current situation, but Post-COVID is the more technical term. While COVID and Post-COVID are new illnesses that medical scientists have only scratched the surface of understanding, I was surprised to learn that post-illness syndromes have been around for a long time. A few months ago, I read an article1 that explained that “long colds” and “long flus” are a thing, but because they affected so few people over the years they haven’t been much studied. The takeaway I got from that article is that the numbers of Long COVID or Post-COVID patients quickly reached a threshold that makes this phenomenon finally worth studying and understanding (from a medical research POV; from a patient POV, understanding post-illness syndromes seems long overdue).
Initially, I thought that this was a good thing that post-illness syndromes are finally getting attention and research. A friend, who experienced post-mono over a decade ago, confirmed that since post-COVID appeared there is greater compassion and acceptance in the medical community for these nebulous conditions. The amount of effort that it took her to find a medical professional who took her seriously parallels the stories I’ve heard about early post-COVID patients. Fortunately(?), I entered the post-COVID game late enough that I spent unnecessary energy preparing for a drawn-out battle over my diagnosis that never happened. My doctor accepted post-COVID as a thing, I just had to have it for three months before I could earn that label.
However, I’ve started to question my cheery acceptance that the change in the medical community’s outlook on post-illness syndromes is a good thing. The second disability pride memoir I’ve read, Such a Pretty Girl by Nadina LaSpina, introduced me to post-polio syndrome. In the 1990s (or 1980s), Nadina was diagnosed with post-polio syndrome. Based on her memoir, it sounded like an easy diagnosis in that the medical professionals she worked with were very familiar with the syndrome.
And that makes me mad. If it was so easy in the 1980s/90s to diagnose post-polio, why was it so hard 30+ years later to diagnose Long/Post-COVID? How come so many people who developed Post-COVID before me had to go through the battle of being told by medical professionals, “it’s all in your head,” when the experience and the symptoms are very real?
On top of that, the scary thing about post-polio is that it typically develops 30-40 years after the original polio infection. The assumption is that I will get over Post-COVID eventually, maybe not in the original 6-12 month estimate, but within 24 months still seems a possibility. Another less explicitly stated assumption is that once I’m over it, I’m over it. For me, learning about post-polio has reopened the question about the long term effects of Long COVID. Unfortunately, Long COVID hasn’t been around long enough and other post-illness syndromes haven’t been researched well enough to know if a resurgence of symptoms is possible 30-40 years down the road of life.
- I don’t believe this is the original article I read earlier this year about post-illness syndromes, but Time Magazine has a well-written December 2022 article that touches on many of the same points. ↩︎
Feature image credit: virus by metami septiana from Noun Project (CC BY 3.0)
Carolyn Ristau 
I wonder if shingles is thought of as post chicken pox?
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Good observation. Shingles sounds similar to what I’ve been reading about post-polio syndrome. So as a non-medical professional, I’d say yes, shingles is a post-chicken pox syndrome.
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