Martin was diagnosed with epilepsy when he was 19 years old. He shares his story and experiences of living with the condition and also having encephalitis, inflammation of the brain.
How did you feel when you were first diagnosed with epilepsy?
I don’t remember exactly how I initially thought about the diagnosis, I suppose at a young age I simply brushed it aside and never took my medication as prescribed.
I do remember it was days or even over a week when I took the medication. At the time, I didn’t think it was a big deal.
What type of seizures do you have? How does it affect you?
I have encephalitis and it has affected me in a lot of ways, as I said at that age it prevented me from going to discos, concerts, night clubs etc, as strobe lights and lasers could easily have caused me to have seizures and I found that out the hard way by going to these places.
It has also stopped me dead in my tracks of doing certain occupations.
For example, working at heights, working with machinery including computers, driving and also enlisting in the armed forces, training as a nurse and a large amount of other professional occupations, plus donating blood is not allowed.
It never really bothered or affected me in my early years but as time went on it certainly hit me with a bang.
What challenges have you faced since being diagnosed with epilepsy?
Changes to my life have been more or less unaffected as I kind of came to terms with my diagnosis at an early age but the older I have got I have realised how badly these changes have affected me.
I used to be a carer but during the COVID period, I was working 10 to 12 hours every day for 20 months and then it changed my life completely in all manner of ways.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Personally, I don’t think it has caused me to believe in any other experiences occurring to me as I knew my life would completely change.
One bonus about my diagnosis it stopped me from becoming an alcoholic or drug addict as a lot of people I grew up with turned to these addictions which have unfortunately caused their early deaths.
Do you feel that epilepsy has stopped you doing what you want to do?
Yes, epilepsy has stopped me doing what I hoped and wished for but I never saw the point of complaining or moaning about it as this is the way it is and it cannot be changed.
Do you feel there is a stigma surrounding epilepsy?
Yes, there is a stigma attached to epilepsy but there is also a stigma attached to quite a lot of other health issues and that’s simply down to people not understanding the feelings and emotions that we all suffer from.
Is there anything else you would like to add?
Speak about how you feel. Speak about your emotions and get help from as many professionals as you can and more importantly your family to help and support you through this.
It can and will be a torturous and hard route you will have to face but we all need support to help us all.
Especially, do not, as I did, hide your emotions and feelings as it can and will lead to you taking the final steps in destroying not only your life but also the family and very good friends who love and support you always.
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.
