The unseen side of my childhood epilepsy – by Jess
I was admitted to hospital at just three days old after doctors found I had a stroke. Soon after, I began having seizures and was diagnosed with West Syndrome, a rare form of epilepsy. That means I had to grow up early. Much earlier than other children.
While other kids were learning to hold a pencil, I was having MRIs.
While they were playing at the park, I was learning what it meant to have seizures and why my brain behaved differently.
While they were planning sleepovers, I was checking if a place felt safe, or if the adults there knew what to do if I had a seizure.
This is the unseen side of childhood epilepsy.
Growing up in hospitals instead of playgrounds
My childhood was full of hospital letters, waiting rooms, and adults talking about my brain.
I learned words like hemiparesis, EEG, focal seizure, and tonic ‑clonic before I learned long division.
I used to carry rescue medicine in a small bag. Most children my age carried snacks or toys.
That alone makes you grow up faster.
Appointments were a normal part of life. Missing lessons for scans was normal.
Getting weighed, tested, prodded, questioned - normal.
This is what epilepsy asks of you when you are still tiny.
Learning to be careful long before I learned to be confident
Growing up, I watched other kids run around without thinking.
I could never do that.
I always had to think:
- Is this too noisy?
- Could stress trigger a seizure?
- Will people laugh if something happens?
- Do the adults here know what to do?
- If I feel “off”, should I stay home?
When I went to friends’ houses, my mum had to explain my epilepsy.
At school I taught my friends how to help me if I had a seizure.
Most children don’t have to teach other children how to keep them safe.
I didn’t always want to share, but I had to.
Epilepsy makes you grow up early because your safety depends on it.
Growing up anxious, before I understood anxiety
When I started secondary school, everything got harder.
Big buildings. Loud crowds. New teachers. New routines. New stress.
My anxiety got worse. Stress triggered seizures.
And after each one, I felt older than my age all over again.
There were days I would walk into school and feel like the world was too fast, too loud, too risky.
I stuck close to the SEND staff because I trusted them.
I missed lessons because I was scared of having a seizure in front of everyone.
I watched my friends worry about homework or crushes.
I was worrying about staying conscious.
When I look back, even at 13, I felt 20.
Growing up with responsibilities children shouldn’t have
Some responsibilities felt huge:
- sticking to strict medication times
- watching for tiredness
- explaining myself again and again
- coping with side effects like exhaustion and no appetite
- managing panic attacks
- preparing for hospital admissions
- dealing with teachers who didn’t understand
- avoiding activities in case they weren’t safe
These are adult worries.
But young people with epilepsy learn them early, because we don’t get a choice.
Where I found support - and why it matters
Everything changed when I joined the Young Epilepsy Youth Voice Network.
For the first time, I was in a room (even on Zoom) where no one needed epilepsy explained.
I didn’t have to pretend.
I didn’t have to be “brave”.
I didn’t have to grow up early just to be understood.
Meeting other young people made me feel safe, seen, and less alone.
It gave me confidence.
It helped me accept my epilepsy instead of fighting it.
This is why support groups matter.
They give children back a piece of the childhood they lose to epilepsy.
Looking forward
I still have days where epilepsy feels heavy.
But I’m learning to live with it, not fight it.
College feels scary, but have already found friends who understand - one even has epilepsy herself.
I will keep speaking up so other young people don’t feel they have to grow up early like I did.
And I will keep saying this:
Where there is awareness, there is hope.
Where there is support, children can be children again.
