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⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.
A love-letter to MS self-advocacy, wrapped in barbed wire
There’s a point in this MS journey where the penny drops — not the diagnosis, but the darker penny:
No one is coming to save you.
Not the neurologist with the framed qualifications. Not the nurse who thinks fatigue means “sleepy”. Not the turmeric-worshipping cousin who thinks they’ve cracked your nervous system with a spice rack.
They can stand beside us. Support us. But they do not live in this body.
They don’t feel lightning legs at midnight. They don’t taste steroid-metal at 3am. They don’t forget how spoons work mid-breakfast.
We do.
So when a treatment doesn’t fit, when the side effects steamroll you, when the plan feels wrong — that’s when the real fight starts.
Because if you don’t speak, you vanish.
THE DISAGREEMENT MOMENT
You sit in a room lit like an interrogation chamber. White coat opposite. Clipboard poised. Confidence radiating like WiFi.
You say:
“This treatment is making me worse.”
And you watch that look happen — the blink, the polite file-away, the mental note:
“non-compliant patient.”
Medical disagreement is treated like disrespect. Not curiosity. Not collaboration. Disobedience.
And you think:
“Why are you holding the map when I’m the battlefield?”
THE TRUTH THEY RARELY ADMIT
MS is chaos wearing a nervous system like a borrowed coat. It mutates. It hides. It laughs at predictability. And sometimes — yes, brace for impact — the patient knows more. Because we're the ones living the symptoms, not studying them. Because we feel every electric misfire, every bladder rebellion, every cognitive fade. Because we are the data in motion. If we don’t advocate for ourselves, we become spectators in our own disease. Not happening.
WHEN YOU SAY NO, YOU’RE NOT REBELLIOUS — YOU’RE ALIVE
We’re trained to nod. To thank. To comply.
But disagreement is not disrespect it’s self-defence.
You’re not awkward. You’re not dramatic. You’re not “difficult.”
You’re protecting the only nervous system you’ve got.
And sometimes survival is two syllables long:
“I disagree.”
WORDS YOU CAN USE NEXT TIME YOU’RE IN THAT ROOM
Steal these. Tattoo them mentally. Use without apology:
🞂 “This isn’t working what else is available?” 🞂 “Slow down, brain fog is real.” 🞂 “Show me evidence, not reassurance.” 🞂 “I don’t feel heard right now.” 🞂 “I want options list them.” 🞂 “No.”
That last one is a grenade. Pull pin when needed.
FINAL TRUTH
Some doctors will respect your voice. Some will hate it. Some appointments will feel like war. But silence is a slow suffocation. Speaking up is oxygen. Say the hard words. Own your body. Be heard even if your voice shakes through every syllable. MS can take many things but not your agency unless you surrender it. And you’re not surrendering anything.
Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
