Emily was diagnosed with epilepsy when she was just three years old. She shares how her diagnosis has impacted her life and mental health.
How did you feel when you first got diagnosed with epilepsy?
As I was diagnosed with epilepsy at a very young age, I wasn’t fully aware of how epilepsy would affect my life.
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.
What type of seizures do you have? How does it affect you?
I currently have cluster seizures; they make me really tired and I have no energy after it.
It stops me from working as I could harm myself or others, cannot drive, and 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?
When I was young, I didn’t have any friends because I felt that nobody wanted to have a friend with epilepsy.
I have not been able to drive, I can’t ever have a job unless it’s voluntary and I forget things easily.
Epilepsy has stopped me from driving, going places myself, and working in case I take a seizure.
Has your epilepsy diagnosis impacted your mental health? If so, in what way?
Yes, because it gets me down sometimes when I see people do things that I can’t do.
I feel depressed at times say like when I walk past shops and see people with a proper job that can work.
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, I just have to get on with my life.
What kind of support have you received to help your mental health?
My family is very supportive of me. I tell them I’m upset because I can’t do something now because I’ve taken a seizure and that’s where the guilt comes in.
I feel like I’ve spoilt someone’s night because I know they are always worried about me.
They say, “But you can’t help when you’re going to take a seizure.” I agree but it doesn’t take the guilt away.
Relaxing and talking to my mum has helped my mental health.
What would you say to others who have been recently diagnosed with epilepsy and may be struggling with their mental health?
Please don’t worry so much about taking a seizure, please carry on with your daily life and try don’t think about what will happen.
It’s possible if you keep thinking about it you may trigger a seizure.