Living with epilepsy for 13 years

Claire was diagnosed with epilepsy in 2009. Here she shares her experiences, how epilepsy affects her and what she would say to someone who has been newly diagnosed.


How did you feel when you were first diagnosed?

I couldn’t believe it. I just gave birth to my daughter Teegan.

When I was in the hospital having Teegan I had my first seizure and then had another two more, so I got a c section.

I found out a few months later I had epilepsy. I always had frontal lobe seizures.


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

I have frontal lobe seizures, tonic-clonic, and absence seizures. It can affect me in many ways.

I also have an eating disorder from the medication and I feel as if am never getting better.

Also, I can have depression and really bad mood swings. I would just love to help someone like me so they are not house trapped 24/7.


What challenges have you faced since being diagnosed with epilepsy?

Many Challenges. I struggle with eating and was kicked out of college for having epilepsy even though they knew before letting me in.

I don’t like taking my daughter out by myself in case someone was to take her if I was to have a tonic-clonic seizure and I can’t remember anything when I come round. Also, I am very controlling.


Do you feel that epilepsy has stopped you doing what you what to do?

Yes if I never had epilepsy I would be a makeup artist with my own salon. Now I can’t because I have a shaky hand due to medication also.


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

It is definitely more than seizures, our memory and mental health take a big impact. I get told I am a health and safety risk at almost every job I go to and that makes me feel worthless.


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

If I just heard someone has epilepsy, I would make sure they were ok. Tell them and be real with them you may go into shock which is ok and don’t worry about that.

Set alarms on your phone or your clocks for your medication. Make sure you take your medication same time every day/night at the same time.

Always keep a diary for seizure activity and make sure you have your epilepsy nurse number is up to date.


Is there anything else you would like to add?

I would like epilepsy spoken about a lot more as no one should be ashamed of having epilepsy. I would also like to see more support groups.

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