Living With FND: A Life Rewired

Some stories don’t begin with answers.They begin with silence, confusion, and the disconcerting feeling that your own body is no longer yours.

Mine began in October 2023. I was rushed to hospital with symptoms so severe the doctors thought I was having a stroke—slurred speech, weakness, disorientation. But when the scans came back, the picture was far more complex. They discovered a brain aneurysm—but couldn’t determine whether it was leaking or dormant.

What followed were long months in a hospital bed.

Not healing.

Just… waiting.

Eventually, I was transferred to a neurological rehabilitation centre. I’d only been there for about four weeks when the aneurysm ruptured.

From that first admission to my final discharge home, nearly a year had passed. Twelve months of being passed between wards, consultants, and systems. Twelve months of slow erosion—of ability, confidence, independence.

But the rupture wasn’t the end.

It was the beginning of something stranger.

What Is FND?

Functional Neurological Disorder—FND—is where the brain struggles to send and receive signals correctly. It doesn’t damage the structure of the brain like a stroke or tumour—it disrupts the function.

To the untrained eye, FND mimics other serious conditions: epilepsy, MS, Parkinson’s. But the tests often show nothing. The brain appears “normal” while the body tells a very different story.

Some doctors said it was PTSD—my military history made me a neat psychological explanation. But that didn’t explain the seizures, the spasms, the deterioration. The truth was far more complex. Neurological trauma combined with psychological stress created the perfect storm.

FND is not imagined.

It’s not feigned.

It’s real.

And it’s relentless.

Living With FND

I now use a wheelchair. My balance, strength, and coordination are unpredictable—often absent.

I suffer from functional seizures, muscle spasms, and crippling cramps.

Fatigue is constant, like a fog I can’t lift.

And the pain—chronic, deep, exhausting—is my companion from dawn until dusk.

I’ve lost the sight in my left eye.

My speech falters.

My memory fractures.

Light burns. Sound confuses. Thought escapes.

I struggle to express myself. My words don’t always come. Sometimes my wife has to speak for me. Sometimes she can’t. And when that happens, I feel like I’ve been unplugged from the world—like my microphone’s been yanked out and no one can hear me anymore.

It’s not just my body that’s changed.

It’s how I’m seen. Heard. Understood. Or not.

A Disorder Misunderstood

One of the cruelest truths about FND is how often it’s doubted—not because it’s rare, but because it’s invisible. If something doesn’t show up on a scan, too many assume it must not exist.

Even after my discharge, during follow-up appointments, the focus has been almost entirely on the aneurysm—the “significant event.” Doctors will speak at length about the rupture and the subarachnoid haemorrhage. But FND?

It’s met with silence. Dismissal. Evasion.

It’s as though the condition I actually live with—day in, day out—doesn’t deserve mention.

And I know I’m not alone in that.

We often have to fight not just the condition, but the disbelief that surrounds it.

Where I Am Now

I don’t write this for pity.

I write to be heard.

There is no neat ending here. No redemption arc.

Just a man learning to live differently.

Some days I have the strength to write, to reflect, to connect.

Other days I vanish inside myself.

And yet—here I am.

Still writing.

Still thinking.

Still fighting for understanding.

If this post reaches even one person—someone living with FND, or someone who’s never heard of it—then it will have served its purpose.

Because even if the world sometimes fails to listen…

we still speak.

By Dusty Wentworth