Macy’s Story | FND Awareness Day UK 2026

A personal story of living with Functional Neurological Disorder (FND).
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18, and my life changed in a way I never saw coming.

I woke up one day and I couldn’t see. My eyes were open, but everything was just… gone. I tried to move, to sit up, but my legs wouldn’t respond. It felt like my body had shut down overnight, like it didn’t belong to me anymore. I remember the fear more than anything lying there, trapped, not understanding what was happening.

At 18, you’re supposed to be living, not surviving your own body.

Months went by, and just as I was trying to process everything, something else started. The seizures.

They came out of nowhere. My body would suddenly lose control shaking, collapsing, completely out of my hands. It was terrifying, not just for me but for everyone around me. And the worst part? I couldn’t stop it. I couldn’t predict it. I couldn’t even explain it properly.

That’s when I was told it was Functional Neurological Disorder.

It’s hard to make people understand. Because on the outside, you might look okay. But inside, it feels like your body is constantly betraying you. One day you might manage, the next you can’t see, can’t walk, or you’re dealing with seizures that take everything out of you.

It took so much from me my independence, my confidence, my sense of normality. But it didn’t take everything.

Because I’m still here.

I’m still learning my body, still rebuilding piece by piece.

~ By Macy, Age 20