I’m Paige, and I want to tell you what it’s like to be a young person with epilepsy in school - not the medical version, but the real-life version. Schools often talk about policies, risks and procedures. But what makes the biggest difference is whether they understand me.
Here’s what I wish every teacher, parent, and student knew.
1. Epilepsy affects my learning, not my intelligence
I’m not slow. I’m not lazy. But seizures and absences steal things from my memory.
“I was really struggling to take in the information… and after seizures I wouldn’t remember the information I had taken in.”
If I ask again, it’s because I need to - not because I wasn’t listening.
Please repeat things without making me feel like a problem.
2. My behaviour can change because of seizures, not because I’m ‘acting out’
This one is huge.
Because I have ADHD, I sometimes got bored and became disruptive. Teachers often said it was “behavioural”, when actually it was part of my conditions.
“They put that down to behavioural issues.”
The teachers who understood me didn’t embarrass me. They changed how they taught or kept an eye out for seizure signs.
Understanding saves shame.
3. Don’t treat me like I’m fragile - treat me like I’m human
One of the biggest misconceptions is that young people with epilepsy want pity. We really don’t.
I hate the sympathy… I’m absolutely fine.
I want:
- respect
- honesty
- space to be myself
- support that feels normal, not dramatic
4. Notice the small signs - they mean everything
One of my SENCOs spotted my absence seizures before anyone else did.
“He was talking to me, and then I had one in front of him. He realised what was happening.”
Those little signs? They’re early warnings. They keep me safe.
When teachers notice, it means they see me, not just my condition.
5. After a seizure, please don’t rush me
I often needed time, space and someone calm to stay with me.
“They’d stay with me until I’d fully recovered.”
I’m vulnerable in that moment. I don’t need a spotlight. I need kindness and patience.
6. Humour helps me feel normal again
One of my teachers made a gentle joke after a seizure:
“Paige, can we get up and do some algebra now, please?”
It made me feel like myself.
Not like someone to tiptoe around.
Humour - when used kindly - reduces shame.
7. Whole‑school awareness keeps me safe everywhere
I didn’t know every teacher was briefed on my condition until later:
“They put my face on the board and said, ‘This is Paige… this is what you should do.’”
This wasn’t embarrassing - it saved me from constant explanations. It meant:
- science teachers knew the risks
- drama teachers knew my signs
- PE staff prepared the room
- cover teachers weren’t caught off guard
Awareness is inclusion.
8. Listen to us – we’re the experts of our own lives
Young people with epilepsy want to have a say in how we’re supported. We want to be involved. Not spoken for. Not excluded.
“It meant a lot when someone took the time to really listen to me and understand what I needed – not just what they assumed I needed.”
A final word from me
“I want the attention for the awareness, not the sympathy.”
If schools listen, respect us, and include us, we can thrive just like anyone else.
We don’t need perfect systems.
We need human ones.
