I Have A Mystery Illness. This Is What It’s Like When No One Knows What’s Wrong With You.
I’m not sure what’s wrong with me, but I do know a lot of things I don’t have. When I began experiencing mysterious nerve-related symptoms in early 2019, I was tested for multiple sclerosis, lupus, lyme disease, a B12 deficiency, and a host of other things over the course of several months. I had countless blood tests, two MRIs, and one particularly strange test where a doctor used something (this is not correct, but cattle prod comes to mind) to stimulate the nerves in my legs and feet to see if they were working properly. And work they did. So well, in fact, that I nearly kicked the nurse in the face.
“We usually do this test on old guys with diabetes; they just lie there,” the nurse said with a somewhat comforting frankness. Wanting to do a good job on the test ― I’ve always had a bit of a goody-goody streak ― I’d braced myself to withstand the painful shocks, not realizing until returning home that I’d pressed my hand against my chin so hard that all of the blood vessels in it broke, leaving my chin (one of the few non-cattle-prodded parts of me) red and bruised.
It was great that my nerves worked ― certainly, that’s the result I wanted. But nothing explained why my feet felt (and still feel) like they are full of radio static or why the muscles in my legs are sore and twitch ― a lot. Or why on earth the static in my feet turned up when I bent my neck down. This was by far the most concerning symptom and the thing that got doctors the most animated I’d ever seen them in my 32 years of relatively healthy life (0/10, do not recommend the feeling of having doctors get excited about you).
But the typical causes for that weird symptom, which I’ve since learned is called Lhermitte’s sign, were ruled out. (And, perhaps fittingly, the description of this symptom isn’t really a perfect fit for what I felt.) As I was going through test after test, I became so determined to figure out what was up that I even made a spreadsheet detailing my symptoms, family history, and everything I’d done in the months leading up to the symptoms. I know ― really obnoxious stuff. I must have been hoping, if not for a definitive diagnosis, at least to be the doctor’s pet.
My primary doctor was intrigued when she saw on my spreadsheet that my mom and grandma both have essential tremor, a condition that makes their right hands shake, particularly when trying to do something that requires fine motor skills. My 93-year-old grandma quite endearingly employs a typewriter to write messages in my birthday cards (to this day!), her writing no longer legible. It seemed connected, somehow, like the condition dutifully made its way down the genetic line but misfired and landed at my feet.
But it still didn’t really add up. I had to settle for the foggy “maybe” causes I’d been given. A neurologist told me that the radio-static feeling might have something to do with my migraines, which I’ve had since adolescence. My doctor said it might be fibromyalgia, which I could tell she was not satisfied to conclude. She hasn’t added it to my chart ― even now. And, honestly, I get it. There’s no test to prove it conclusively. It’s a who knows, shruggy-emoji type of diagnosis, and she seems like a straight-A-student type like me. My spouse said, “That sounds like Jessica syndrome” when I showed him a list of the symptoms, and that’s pretty much as scientific as the diagnosis gets.
My doctor recommended exercise, which sounded like a rather anticlimactic treatment. It does help the twitching, though. If I tire my nerves out, they get less antsy, much like how I walk my dog so she doesn’t rip up the couch.
With so many frightening diagnoses seemingly ruled out, I get to describe myself as a healthy 36-year-old, I think. Or, “healthy with an asterisk.” Or, “calm if given enough exercise.”
In 2020, when I started reading about long-haul COVID, I was frightened ― and I could relate. For many, it involves a mixed bag of mysterious symptoms and numerous trips back to the doctor to rule things out without much hope of ever getting a firm answer on a blood or imaging test. A stunning number of those infected with COVID — 50% ― have experienced some degree of long-haul COVID symptoms. (TBD if omicron will be similar.)
I didn’t know what mysterious nerve problems plus COVID equals, and I wasn’t trying to find out. Through some mix of determination and privilege and luck, I still haven’t found out. I’ve never seen that little pink strip on COVID rapid test. And although I doubt my lungs are impacted by my pre-existing shruggy condition, I’ve always been particularly concerned about long-haul COVID. I’m already long-haulin’ something, and I’d prefer not to add any more freight.
“The pandemic has really made me wonder where I fit when it comes to healthy and unhealthy people. And that’s the way-too-simplistic way we’ve all been grouped for the past two-plus years.”
The pandemic has really made me wonder where I fit when it comes to healthy and unhealthy people. And that’s the way-too-simplistic way we’ve all been grouped for the past two-plus years. Have diabetes (which one in 10 Americans have)? Unhealthy. Over 65 and healthy? Unhealthy. Asthma? Get right on out. Healthy has become like a club with the meanest bouncer.
But I still want to get in. After a year of doggedly pursuing a diagnosis, I stopped talking about my symptoms almost entirely ― even to my spouse. It had become pretty clear that I wasn’t going to solve the puzzle, so instead, I just wanted to pretend they didn’t exist. To the best of my ability, I all but ignored my symptoms.
Recently, I had to bring them up to my spouse during a conversation about finances. He simply couldn’t understand why I wanted to save the amount I did. (And, to be fair to him, we are pretty much at the end of the world, yeah? Why not get an arcade machine?)
But the reality is, any level of numbness (what the static feeling most likely is) in feet is not a good thing, and I have no idea what it means in terms of my ability to use my feet for the next unknown number of years. I get around fine for now, so I can present like nothing is going on. And that’s how I like it. Talking to him about why I want to save money was a moment of stripping down, of reminding him that everything is not totally fine ― that I’m not 100% fine ― and who knows when or why we might need savings in the future.
It’s tough to say how many people live with a mystery illness, but as many as 30 million Americans live with a rare illness. And I guess that includes me ― probably. But I’ve gone from I must find the source at all costs, to I need to live as healthy as I can and be happy with the health I do have. It was, in retrospect, a gigantic mental shift.
That outlook keeps me (mostly) sane, but it also involves letting go of a certain amount of hope. I no longer hope that my symptoms will go away because hoping would mean focusing on them. I had to accept a failing grade in order to move on.
That might sound familiar to people with long-haul COVID. At some point, you shift away from hope and to the practical: to managing symptoms, to living as well as you can, to hoping nothing gets worse.
When I had a close contact with a positive case at work in fall 2021, I was told, “Oh, you’ll be fine,” from someone who had truly no idea whether or not I’d be fine. This comment was no doubt influenced by the fact that I live in the Midwest, and pretty much everyone displays a “tougher-than-thou” attitude when it comes to the COVID. How I’d love the luxury of choosing that attitude.
But, truthfully, I was a little glad that person made the comment she did. Because I badly want to belong in the group she thinks I belong in ― where the healthy people are ― where I maybe, kinda, sorta do belong. For now, I can still sneak in.
Jessica Carney is a Midwest-based nonfiction writer and the host of “And Then I Quit” podcast. She’s writing a book about the wild experiences she’s had as an event planner. You can find her on Twitter at @JessC_writer.