My experience of being diagnosed with epilepsy


Sarah-Louise shares her experiences of being diagnosed with epilepsy at a young age and how the coronavirus pandemic has affected her epilepsy.


How long have you had epilepsy?

I have had epilepsy for 16 years now. I was diagnosed when I was seven and I’m turning 23 this month.


How did you feel when you first found out you had epilepsy?

I was only young when I found out about my epilepsy. I was confused, scared (very), humiliated, embarrassed and I thought no-one would accept me. Overall I felt lonely.



What type of seizures do you have and how does it affect you?

For me, I always had Absence seizures but as I grew up and stress started piling on I started to develop Tonic-clonic seizures. Seizures can vary with me which is scary.

I have limits on what I can and cannot do because of my epilepsy, which is hard to accept especially when you can’t do something you really want to do such as swimming, which is dangerous along with other sports and hobbies.


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

Yes! Epilepsy is so much more than seizures! It is stress, fatigue, mentally draining, discrimination and so much more.


Do you feel the coronavirus pandemic has affected your epilepsy? If so, in what way?

Yes definitely. Coronavirus is scary, confusing and frustrating but for someone with epilepsy, it can be so much more stressful and confusing.

Coronavirus has made me feel very scared and stressed which in return can cause my seizures.

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.