A version of this blog post has already appeared at Stone’s Throw Microfarm: https://www.stonesthrowmicrofarm.com/blog/long-covid-and-something-else
I’m finally comfortable sharing about this publicly. It’s taken me some time, because things haven’t always gone well when I’ve been honest about the journey I’ve been on. It all began a little over two years ago, in January 2022, when I caught a post-vaccination case of COVID-19 and never quite got better.
This Seems to be Way More than Long-COVID
I was sick for two weeks. Then started to get a little better. But then I started to have symptoms that were pretty off the wall, even by “Long-COVID” standards. I struggled with balance, motor control and coordination problems, nausea, and joint pain everywhere, as well as the bouts of fatigue that were more classically “Long-COVID” related.
Then there was the really weird issue: Any time I flexed or extended my neck (looked up or down—think kitchen work, desk work) for more than a few minutes, a fiery electrical sensation shot from my neck down my arms and also from my neck up into my face. What?
These truly weird symptoms came and went. Some days were worse than others. Most days the symptoms showed up and worsened as the day went on. The only thing that was consistent was how structural it seemed—certain movements or postures made things worse. If I stretched or overworked my neck, or overworked my arms, or even curved my lower back too much, any of those actions could trigger a waterfall of nerve pain and motor control problems.
Courtesy all the strange neurological symptoms, I spent almost two years being poked and prodded (literally, so many needles). The initial theory was that COVID-19 poured inflammatory fire on some underlying genetic or autoimmune condition. I was tested for everything from ALS to rare, untreatable forms of Multiple Sclerosis. The only thing worse than confirming a death sentence diagnosis is finding out you don’t have any of those rare disorders, but no one can figure out what actually is wrong.
After a year and a half of referral-hopping, a few doctors wrote me off as psychosomatic and told me to take antidepressants. Funny. I didn’t feel depressed till doctors started totally dismissing me.
Diagnosed, at Last
Finally, in late 2023, a fellow patient in a chronic pain support group gently recommended that I contact one more specialist, someone focused on rare “connective tissue disorders”. This new friend gently insisted: Your symptoms remind me of my condition.
I rallied enough to fill out half an inch of paperwork and submit my case notes for a 12th opinion. Three months and several blood tests later, the new diagnosis materialized.
Yes, I had Long-COVID, but the systemic inflammation from COVID-19 had aggravated an underlying genetic disorder: Ehlers-Danlos Syndrome, specifically the hypermobile form, or hEDS for short. My GP’s original theory hadn’t been so far off. COVID had indeed accelerated an underlying genetic condition.
It took me two years of wrong diagnoses and dismissals, before I finally got this diagnostic clarity—courtesy the dumb-luck of knowing someone else with the rare disorder. As shocking as that seems, I recently learned that most EDS patients go an average of FOURTEEN YEARS with no diagnosis (or overt misdiagnosis), before they’re appropriately referred. Wow.
A Unique Expression of a Rare Disorder
hEDS compromises all my ligaments and, particularly for me, it severely affects the connective tissue that holds my spinal vertebrae in place. Several regions along my spine and in my neck are now especially lax or “hypermobile”. The vertebrae shift, sometimes directly pinching on my spinal cord and branching nerves. Not great.
This can be profoundly painful, or it can just make me suddenly clumsy, or suddenly profoundly tired—depending on what is being impinged at any given moment. If a sensory nerve is impinged, that can cause tingling or pain. If a motor nerve is impinged, I can have sudden problems with motor control or coordination. If there is pressure on the upper spinal cord itself, the symptoms look more like sudden exhaustion or problems with swallowing or balance.
What a wacky roulette wheel of symptoms! At least I have new understanding of what’s going on. Sometimes I feel like I’m experiencing a fresh spinal cord injury a few times a day. That’s because, in a way, I am.
The Elephant in the Room
Does all this affect my work? Mostly no. It hasn’t affected the quality of my work. Over the past couple years, I had several out-of-state clients who were never aware of my physical challenges at all. They only saw me via videoconferencing and simply enjoyed what I brought to their projects as an editor, writer, or coach.
This condition has affected how I schedule my days. That much is true. I have also acquired some adaptive equipment that makes my desk work way more comfortable. So hEDS does affect how I work. But this physical disability doesn’t alter the quality of my work.
I love my work and have no desire to retire early. These past two years have only made me appreciate my clients even more and take greater delight in our creative projects together.
This year, as I begin more appropriate treatment and care for my condition, I feel immensely grateful to every local client who learned about what I was going through and chose to work with me as an editor or ghostwriter anyway. They knew the quality of my work. They knew I would continue to deliver the results and the material they needed.
My heartfelt thanks to all of you!
