Chapter one
My FND journey.
This is the long version of an answer I'm often asked. Take what's useful, leave what isn't, and please be gentle with your own story too.
01
Before
When something was wrong but no one could say what.
Tingling that travelled. Legs that buckled. Words that arrived a beat late. I learned the inside of A&E waiting rooms and the careful faces of doctors who wanted to help but had to rule things out first.
02
Diagnosis
The day FND finally had a name.
Functional Neurological Disorder — a glitch in the software, not the hardware. Real symptoms, real brain, treatable. I cried, and then I started reading.
03
Treatment
Building a toolkit, slowly.
Specialist physio, talking therapy, pacing, sleep, and the small daily rituals that anchor a wobbly nervous system. Some weeks I do all of it; some weeks I do none of it. Both are allowed.
04
Now
Living wide, not just long.
I still have bad days. I also have a kitchen, a wardrobe I love, a home that holds me, and a table I set for friends. FND is part of the story — not the whole sentence.
What stays
The symptoms that may never go away.
I have worked so hard to get to this point. I actually look healthy. I feel inspired. But some symptoms stay — quiet, stubborn passengers — and the fight to regain the former life I had is steadfast. I fight hard every day to praise the person I've become, look forward, and keep moving forward. One inch at a time.
Gastroparesis
A stomach that forgets how to empty. Meals sit heavy, nausea lingers, persistent vomiting takes its toll, and eating — once one of life's great joys — becomes a careful negotiation. I've learned to eat small, eat slow, and forgive my body when it says no to a plate I once would have cleared. It is exhausting, and it is real.
Dystonia
Muscles that contract and twist without permission. My neck pulls, my hand curls, my posture shifts into shapes I didn't choose. It is painful, it is visible, and it is deeply unfair. But I have learned to breathe through it, to rest through it, and to find clothes and positions that give my body grace even when it won't hold still.
Dysphasia
Words that live in my head but won't come out on command. In the middle of a sentence, the thread drops. Names vanish. The world keeps talking while I reach for sounds that feel just out of reach. It is isolating. It is frustrating. And it is not a reflection of my intelligence — only of a nervous system that misfires.
Desensitisation
A nervous system turned up too loud. Light, sound, touch, temperature — all of it arrives at full volume. What others barely notice, my body reads as threat. I've had to rebuild tolerance inch by inch: a dimmed room, a soft fabric, a single voice before a crowd. Progress is glacial. But glacial still moves.
One inch at a time
I fight hard every day to praise the person I've become.
The former life I had is not the finish line — it is the direction. I look forward. I keep moving forward. Not because the symptoms have vanished, but because I have learned to carry them with pride.
— Cass
If you're in the early chapters of this — you are not imagining it, you are not alone, and you are allowed to take up space. Sending love. — Cass