Living with epilepsy: Being diagnosed at three years old

Emily was diagnosed with epilepsy when she was just three years old. She shares how it felt growing up whilst living with epilepsy and what she would say to others living with epilepsy.


How did you feel when you first knew you had epilepsy?

I was very young. It was first noticed when I was taking small absence seizures around the age of three and it was a while later before I was actually diagnosed.

I was still young so, to be honest, I don’t really remember much about it, but as I got older I think I felt confused and felt why is this happening to me.


How was it growing up whilst living with epilepsy after being diagnosed at a young age?

I was lonely, not many people wanted to play with me so I didn’t have many friends because I was ill a lot.

I didn’t like it when I took tonic-clonic seizures and was embarrassed especially when I was in school.


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

I currently take cluster and absence seizures. I collapse a lot and hurt myself but luckily enough haven’t had to go to the hospital for a while.

It stops me from working as I could harm myself or others, cannot drive, have to as best I can go out when hopefully I feel I might not take a seizure although as you know this is not guaranteed as they just come out of the blue with no warning.


What challenges have you faced since being diagnosed with epilepsy?

Cannot drive, cannot work, and cannot travel on my own which I wanted to do.


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

Yes, not having many friends and being lonely. It held me back from going out a lot.

I find if I would want to travel I would struggle with getting to places as I cannot remember things and find it hard to follow directions and know where to start. I feel I always need someone with me to help me.


Do you feel there is a stigma surrounding epilepsy?

Maybe when I was younger when children didn’t understand it but not now.


What would you say to others who have been recently diagnosed with epilepsy?

Please don’t stress or worry about it. Try and get on with your day and do what you have to do and try not to worry about what will happen if you take a seizure because that could be a trigger for seizures.

Yes, unfortunately, it is there but depending on how bad it is you just have to deal with it day by day.

Know to stay at home or in a safe place if you feel there is a chance you can take a seizure.


Is there anything else you would like to add?

The good things I have are my daughter which I never thought I would have, my family, and a friend who understands what I am going through.

I can often feel down and a bit depressed when I am going through a bad time and sometimes even if not, but just have to get on with my life.

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