Hi, I Fall Over A Lot
I have multiple sclerosis. Specifically, relapsing-remitting multiple sclerosis (RRMS). Of the two ways MS usually starts, mine is the less bad one, the other being primary progressive multiple sclerosis (PPMS). My RRMS will eventually become SPMS. Trust me, even the better version is bad.
When MS does its damage, that damage is forever. Your brain doesn't heal like the rest of you. For me, most of the damage is in my cerebellum and brainstem, causing permanent dizziness (oh, hey, that author's pretty rad) and spells of double vision.
These symptoms will be there until the day I die, and they'll get worse with time.
That's the slow decline. As more of the brain gets damaged, more things go wrong. I will become incontinent at some point. I am losing fine motor control, and I will continue to.
My memory has shrunk to a one-hour sliding window, and it was terrible in an interesting way in the first place. I adapt by ticketing everything, no matter how small, in Linear. I have built my own tooling, and lean heavily on AI - mostly Claude, because Anthropic are by far the least worst in the field.
I take a disease modifying treatment (DMT) to target the relapses, which means injecting magic goo every month. Before it, I would lose a sense entirely for 3-4 months at a time. Sight, hearing, and taste have all gone for a while.
I am, however, a Kesimpta (ofatumumab) success story.
The Kesimpta depletes immune B-cells with alarming specificity. It has stopped my relapses, which has slowed lesion development significantly. The only side effects of note are increased vulnerability to upper respiratory infections, at which point you skip your dose until they resolve, and an inability to receive new live vaccines.
The DMT preserves as much brain as possible for neuroplastic remodelling; while the brain can't heal, it can reroute. For that, you need to keep as much healthy brain as you can get.
So I'm left with the damage already done and the slow decline, which, let me tell you, is plenty.
That's the background. On to my point.
MS Is Not A Battle To Be Won
I get called an MS warrior in Facebook MS groups all the time. They're so fucking earnest, to the extent that I started my own group to try to escape it. And, frankly, I've had enough of it. Framing living with MS as a war is toxic positivity.
You can't fight this. No amount of positive thinking or beetroot or going for a walk or fucking ivermectin is going to stop you having MS, or stop you having to deal with everything that comes with it. You can manage it and work around it, and that's as good as it gets.
Call it a battle, though, and anyone who can't do what abled people think they should be able to do has lost. That isn't fair, and it isn't true.
Who It's For
Most of the time, I think the warrior talk is for the benefit of the people saying it. "Inspiring fighter" is a much easier thing to hear about than someone with an unpredictable, sometimes devastating condition who occasionally needs to vent without being told to cheer up.
"You're so brave" often means "please don't tell me how bad it really is". I can forgive that to a degree, especially from people I'm close to, because it protects them. But it lets people feel supportive without ever engaging with what's going on.
It also puts the blame on us. If fighting hard enough and staying positive enough means you'll somehow "win", then if you're struggling, you must not be warrioring hard enough. MS doesn't care about your attitude. It's a neurological condition, and it does what it wants.
Some days I push through; other days I rest, or grieve for what I've lost. The MS wins sometimes, and that doesn't make us failures. We'll get up and carry on, and we'd appreciate it if you didn't time us.
We are not your inspiration porn.
What Would Actually Help
We need practical support, like accessible environments, research funding, and affordable treatments. We need people to understand that MS symptoms come and go, often without warning, and that a good day last week says nothing about today.
Living with MS isn't a moral achievement, and it isn't a moral failure either. It's just something that happened to us.
So if you know someone with MS, maybe hold off on calling them a warrior and ask them what they need. When they tell you how it's going, listen, and don't turn it into an inspirational story.
This piece is heavy opinion. If someone with MS tells you that they like the warrior terminology, ignore absolutely everything I've said and call them a warrior. This is one person's viewpoint and it will not apply to everyone.
Many of the links on this page go to the MS Society. They do incredible work for people like me, and they rely on donations. Chucking them a few quid isn't the worst thing you could do today.