My story of living with epilepsy for over 30 years

Simone has been living with epilepsy for over 30 years. Here she shares her experiences, challenges faced, and how she has overcome them.

I started taking seizures when I was 13 years old and have lived with this for over 30 years.

I remember my first seizure like it was yesterday. It was a school holiday in February, the first we had, I was at home with my family.

My sister screamed and hid behind the couch with my cousin. My Dad called an ambulance. When I came round I was confused, tired and asked why me.

At the age of 13, I wasn’t the most confident so didn’t want to tell anyone. My main concerns were if I would be able to still do gymnastics as this was my life and take part in sports as that was my identity.

When diagnosed, I had tonic-clonic seizures. I used to take my seizures just after I woke up. However, about 10 years ago they changed to mostly at night while I sleep.

The seizures in the morning took me out for a day and left me with a bitten tongue and some injuries, the worst of which was a split head.

At night, it is just bladder control but depending on what time I take the seizures, depends if it takes me out for the rest of the day.


Challenges faced

I have faced quite a few challenges having epilepsy between work, school, and home. I think the hardest one was when I was choosing my career at school.

Initially, I wanted to be a PE teacher in primary school but due to my epilepsy, I could only do this in a special needs school.

As a result, I ended up training to be a chef but ended up working for the banking industry.

I know that the more comfortable I became with my epilepsy the more confident I became at educating people about what it feels like and how to help me.

I have had many changes to my epilepsy. Some that were not noticed when diagnosed and some that have recently started as my body changes.

In my over 30 years of experience, I think that epilepsy has become more recognised and understood.

However, most people that have epilepsy never know their trigger, but to this day I have friends and work colleagues who all of a sudden become experts and think they know my trigger.


Epilepsy does not define you

If I was to give people that are diagnosed with epilepsy a piece of advice that I never got, it would be to communicate and educate others and remember nothing will stop you from doing and trying anything.

Epilepsy does not define you. It’s just a part of who you are.

I do feel lucky that my work does recognise epilepsy as a disability and support me fully.

Especially, in this period of uncertainty and working from home, my boss is happy to take my call if something is not quite right and just to check in on me.

I do find it funny at the moment as I am going through premenopause. As a result of heat, I find I twitch which can cause my mouse to fly across the room.

With a loving family and wonderful friends, you can still lead a fulfilling life whilst living with epilepsy.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer on or call 0141 427 4911.