Assuming you’ve already been diagnosed, there are days when you may find your body doing something bodies aren’t supposed to do, and you know that you’re likely experiencing a new MS symptom. Wonky vision, weak knees, and sketchy bladders, are all classic MS symptoms. But MS is a complicated mother fucker and sometimes it’s not so cut and dried. More than once, I’ve had to remind myself that not everything is MS. It’s just that 9 times out of 10, it is MS. When you have a disease that affects the central nervous system, just about anything can go haywire.
Even worse than wondering if a new health issue is an MS symptom, is when on some level, you know it’s MS, but your doctor doesn’t necessarily agree. When I showed up in Emerg with my very first MS attack, I was told I had optic neuritis. My sudden hearing loss was dismissed. Because “hearing loss isn’t a symptom of MS”.
I’m sorry, what? I couldn’t hear you because I’m deaf in one ear.
Like white peacocks, or Starbucks getting my name right; just because something is rare, doesn’t mean it isn’t real. My head explodes just remembering my first taste of the medical gaslighting that sometimes comes with chronic illness. Sadly, certain experts would rather tell you nothing’s happening than admit they don’t know what to do about it.
Which brings me to my most recent, new, and confusing (possible) MS symptom: I’ve been losing my voice. It’s sometimes difficult to talk, it’s hard to cough, and my speech gets fatigued the same way my legs do. It’s not a sexy ScarJo rasp. No. That’s not how MS plays. I sound more like Marge’s mom on The Simpsons. Though not unheard of, vocal issues aren’t a tell-tale MS symptom, so it begs the question of whether or not my hoarseness is caused by MS, or what. In my mind, of course it’s an MS symptom, because wtf else could it be?
Okay, it could be other things, and I’m grateful to have a doctor (now) who takes me seriously, and will get to the bottom of this. In the meantime, I’ll try not to obsess over what a future without talking looks like. I mean, The Banker and I have a strong marital ESP game, but it’s limited to looks that mean “Save me, I don’t know this dude’s name”, “We hate her, right?”, and “Even though I asked you not to buy chips, if you eat the rest of the chips we will have a problem”.
Thanks to COVID, mask-wearing doesn’t even allow for a friendly smile or (more likely a cautionary RBF) anymore; and without words, I’m basically left with eye rolls and raised brows for casual communication, and I’ve got so much more to talk about. Like, “we hate her”, is enough said at the party, but clearly we need to dig into this more in the car-ride home.
I don’t just use my voice for gossip and complaining either. Lately I’ve been covering the French portion of my niece’s COVID-induced homeschooling, I’ve been a guest on a few podcasts, and I even used to sing until MS decided otherwise.
There are no ‘good’ MS symptoms. They all suck, and sometimes it feels like whichever symptom is the loudest is the one I’ve decided is the worst on any given day – or any given moment. When nerve pain keeps me up at night, that’s my worst symptom. When I take something to help the pain, but it makes my legs too weak to walk the next day, my paralysis is the worst thing I’ve got going on. When I need a bathroom, and there’s none in sight, well, you get the picture.
But in the hierarchy of MS symptoms, new ones feel especially troubling–a chilling reminder that my pact with Satan must be set to expire because MS is still lurking, trying to fuck shit up. It’s hard work building the kind of mental resilience required to process and accept so many disabling symptoms. When you wake up with a new problem, wondering what fresh hell this is, you realize that with MS the work is never done.
So, now we wait. I’m being sent for tests; and in the meantime, my Ocrevus start date gets pushed back. Again. Because it doesn’t make sense to suppress my immune system and then send me into the hospital during a pandemic for diagnostics.
Whatever’s going on, I’ll cope with it. I always do. I think MS is at its worst when it erodes the things that are fundamental to our identities. How many times will I be forced to slap on a smile, pivot, and reinvent?
As many times as it takes, I guess.