Hi, I Fall Over A Lot
I have multiple sclerosis. Specifically, relapsing-remitting multiple sclerosis (RRMS). There are two flavours; mine is the less bad version, the other being primary progressive multiple sclerosis (PPMS). My RRMS will eventually become SPMS. But trust me on this; even if it's the better version, it's 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 is heavily impacted (and was terrible in a quite interesting way in the first place), having become a one-hour sliding window. I adapt by ticketing everything, no matter how small, in Linear. I have built my own tooling, and benefit heavily from AI (Claude particularly, because Anthropic are by far the least worst in the field).
I take a disease modifying treatment to target the relapses. I inject magic goo every month. Before it, I would lose a sense entirely for 3-4 months. Sight. Hearing. Taste. All have disappeared for a period. 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 just 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 done and the slow decline, which let me tell you, is not nothing.
But anyway. That's the background. Onward 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 dealing with MS as a war is toxic positivity.
You can't fight this. No amount of effort is going to stop you having MS. You can deal with it. You can optimise for it. You can mitigate it. But you can't fight it.
If you frame dealing with MS as a battle, then you fail when you don't successfully live up to abled peoples' view of what you should be able to do and how you should be able to live. And that's not right. That's not fair.
Dealing With It
We manage MS. There is no battle to be fought. No amount of positive thinking or beetroot or going for a walk or fucking ivermectin is going to stop you having MS, and stop you having to deal with everything which comes with it.
The toxic positivity of the "warrior" narrative also creates a false dichotomy: either you're "fighting bravely" or you're "giving up." There's no space for the nuanced reality that most of us with MS live in. Some days are about adaptation, some about rest, some about pushing through, and some about mourning what's been lost. None of these approaches makes you more or less worthy of support and understanding.
It's Not Even About Us
And let's be clear about something: the "warrior" language is often more about making other people comfortable than supporting those with MS. It's easier for the non-disabled world to process "inspiring fighter" than "person living with an unpredictable, sometimes devastating condition who occasionally needs to vent about it without being told they're not being positive enough."
"You're so brave" becomes code for "please don't tell me how bad it really is". I can forgive that, to a degree. Especially with people I'm close with. It protects them. But "warrior" rhetoric provides so many opportunities for empty pseudo-support without actually engaging with the situation.
The rhetoric also individualises what is fundamentally a medical condition. The warrior language implies that if you just fight hard enough, stay positive enough, you'll somehow "win" - which creates this insidious suggestion that if you're struggling, it's because you're not warrioring hard enough. It completely ignores the reality that MS is a neurological condition that does what it wants regardless of your attitude or fighting spirit.
Sometimes the MS wins, and that doesn't make us failures or weak. We'll get up and we'll carry on. Don't judge us for how long that takes.
We are not your inspiration porn. Instead, there's an opportunity for something better. Solidarity porn. Validation porn. Recognition porn.
What We Actually Need
What those of us with MS need isn't to be called warriors. We need practical support. We need accessible environments. We need research funding. We need affordable treatments. We need understanding that our conditions fluctuate, often unpredictably.
We need acknowledgement without agenda or bullshit. Space for the full range of experiences. Recognition that living with MS is not a moral achievement or failure - it's just our reality.
So please, if you know someone with MS, maybe resist the urge to call them a warrior. Instead, ask them what they need. Listen when they talk about their experiences without trying to reframe them as overplayed inspirational narratives. Recognise that managing MS isn't a battle - it's just life, with its own unique challenges and occasional victories.
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.
One last thing. Many of the links on this page go to the MS Society.
They do incredible work and fight tooth and nail for people like me. They also rely on donations. Chucking them a few quid isn't the worst thing you could do today.