Tracey’s Story

DSC05929Hi! I am Tracey and I developed epilepsy when I was five year’s old. I was diagnosed with photosensitive generalised seizures. Back then my parents were not given epilepsy information and it was suggested that my epilepsy behaviours were psychological in origin.

I have absence seizures, tonic clonics, and simple focal seizures. For the simple focal seizures, I smell a sickly, sweet smell lasting a few seconds and my eyes start to flicker. The biggest problem with that type of epilepsy is that it is not hidden. On a stressful day I can have at least 400 seizures and my head flicks back, eyes roll for about half a second, and it can terrify people because it is unusual. I am on medication but my epilepsy is still uncontrolled although I rarely have tonic clonics.

For me, having epilepsy is part of who I am, but it is not what I am. The judgment of other people does affect me and I would like to emphasise that I am no different from anyone else. Having epilepsy is a neurological issue, and not a mental health one, and more epilepsy awareness is needed to help dispel those myths and fears that many people still hold.

Some of the greatest people in the world have had epilepsy, and they are beacons of hope for us all to a lead a rich and fulfilling life. My life is just that: I have done everything from sword fighting to caring for children with special needs and being a mother. I know what my limits are. I know that I cannot drive a car, go scuba diving or bungy jumping, but I can do everything else that I want to do in life. I haven’t wrapped myself up in cotton wool. I have taken responsibility for a condition, which is unpredictable and I haven’t taken unnecessary risks with my life. I openly tell people that I have epilepsy so that they can help me, should I need their help and understanding.

My message to you is to be positive. Having epilepsy doesn’t define who you are but it does make you have a unique outlook on life.

I would like to thank my husband Jon and my family for their support and love. I know that having epilepsy has an impact on them and, without their help, I would struggle.

– Tracey

Last modified: March 13th, 2015 by EWCT | Posted in: Your Stories