My situation is a little different, because I actually had multiple chronic conditions before I got COVID: I have POTS, HSD (Hypermobility Spectrum Disorder), an autoimmune arthritis, small fiber neuropathy, and central sensitivity syndrome.

It’s very common for a viral infection to kick off neurological and autoimmune conditions. We think that happened to me, because I was really sick for two weeks with an apparent cold, and two weeks later I started having neuropathy symptoms. Within 6 months of that, I started having the joint pain ultimately diagnosed as the autoimmune arthritis and so on. And most people are already familiar with the connection between COVID or a virus and POTS.

I was diagnosed with all these things in roughly 2018 and made progress. By the time lockdown started, I still had symptoms and pain, but my endurance and fatigue and GI symptoms were much improved.

After I got COVID, it all got worse. The doctors said it’s to be expected to have a flare, and it’s usually “transient,” but it wasn’t.

So depending on how you look at it, I either have long COVID or COVID exacerbated by underlying conditions. My neurologist diagnosed me with long COVID; he said there’s ongoing research on situations like mine, but it’s hard to pick apart what was the original condition and what switches got flipped by COVID.

My worst symptoms are fatigue, post-exertion malaise, increased pain sensitivity, and GI symptoms (pain during and after eating, distention, constipation), hyperhidrosis.

My doctor; she’s a gynecologist who specializes in pelvic pain, menopause and providing care to women survivors of trauma who would have difficulty seeking care. I do notice the slips, mostly because she brings it up. She has to write a lot more things down than I noticed her doing before, brings lists into the room when we meet, and she frequently gets right/left inverted. She does some outpatient gynecological surgery as well, and she’s been able to do that, so I think she has to be very intentional about her work and pacing, etc.

She was an avid runner and the COVID caused a chronic lung condition. But she’s been back at work at least. It’s just only during specific times of day and she has accommodations for the number of patients she can see. You’re right; it must be hard to scale back on a career…and life…like that.

I was already limited before this and trying to crawl my way back out, so I don’t want to say I’m used to it, but it’s been so disappointing to have this setback and have it drag out for over a year now.