My story of being diagnosed with epilepsy

Emily was diagnosed with epilepsy when she was just 10 years old and has been living with the condition for four years.

Here she shares her experiences of being diagnosed, the challenges faced, and what she would say to someone who has been recently diagnosed with epilepsy.


How did you feel when you were first diagnosed?

Honestly petrified and incredibly isolated too. Due to my age, I didn’t have social media and what I did have was limited to talking to family or friends at school, none of which had epilepsy.

I knew nobody living with epilepsy and so that was a problem. In all honesty, my diagnosis crushed me. 


Where did you have your first seizure and how did you feel?

I can’t remember, but I remember my first seizure-like activity that happened at my gran’s house.

It was the Christmas before my 11th birthday, and it was all just so confusing. I’m quite well behaved and so to suddenly be throwing my teddies about, getting reprimanded for ‘daydreaming’ etc was quite annoying. 


What type of seizures do you have? How does it affect you?

I’m seizure-free now but I took focal seizures. It affected me in so many ways such as educationally. It affected my concentration and confidence. Also, it affected my sleep, my family life, my moods, it affected my future, everything really. 


What challenges have you faced since you were diagnosed and how did you overcome them?

I think the biggest one would just be coping with the fact that epilepsy is not going away. The biggest thing for me was advocating and speaking up about epilepsy. I feel like I am doing that and it gives me a purpose and makes me proud of my condition. 


We always say epilepsy is more than seizures. Do you feel this has been your experience?

Definitely. I’ve felt so hopeless and so sad over it. The biggest thing is the headaches, they’d ruin my day, make me come home from school so often, it’s horrible. The ableism part too, not just people being ableist to me but experiencing it and BEING a part of a minority who have people being ableist to them has made me realise my own internalised ableism. Epilepsy is so much more than falling over and flashing lights etc. 


What would you say to someone who has been recently diagnosed?

You are living with epilepsy, not your doctor or your parents or your friends, you.

You control yourself, a lot of times you know what’s better for you, speak up and defend yourself.

Fight so hard for everything. The best thing I can say is that you are so strong, and you can do anything. Don’t let epilepsy have you.

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