Matthew was first diagnosed with nocturnal epilepsy in 2019. He shares how he felt when first diagnosed and how he has turned a life-changing event into a positive life-changing opportunity.
How did you feel when you were first diagnosed?
I was originally scared, confused, and angry. Not with anything or anyone in particular. I just felt like my entire world was being taken away from me for something I don’t even remember happening.
What type of seizures do you have? How does it affect you?
I have nocturnal seizures. They have restricted my career ambitions and stopped my social activities for the first year.
What challenges have you faced since being diagnosed with epilepsy?
Since being diagnosed with epilepsy I have had to find a new career path, I have also had to restart and pause my fitness journey.
I was playing rugby and weight training when diagnosed. Unfortunately, this all had to stop when I was diagnosed as they seemed to be seizure triggers.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Epilepsy is by far more than just seizures. I lost my job due to my epilepsy diagnosis and I had to take time to come to terms with and accept my diagnosis.
I have since been able to find a career path that excites me and I am now studying law with a conditional offer to progress to university to study law.
Also, I have found employment with an employer who is aware of and accepts my epilepsy.
Do you feel that epilepsy has stopped you from doing what you what to do?
When I was first diagnosed with epilepsy, I was unable to continue my fitness training as I was prone to having seizures post-training. Although I originally lost my job.
Epilepsy also gave me the opportunity to reinvent myself. I was able to pursue a career that had always interested me and now I’m thriving in and enjoying my studies and looking forward to a long career in the legal sector.
Do you feel there is a stigma surrounding epilepsy?
There is definitely a stigma surrounding epilepsy.
I don’t think that people mean any wrongdoing but I feel that they are scared and uncertain if my participation in certain social events may trigger seizures.
I have been able to explain to friends and family that there are different types of epilepsy and that not all triggers are the same.
How important do you think awareness days like Purple Day are?
Awareness is vitally important as it allows people to gain knowledge of what epilepsy is and to gain a better understanding of how to assist people with an epilepsy diagnosis.
What would you say to others who have been recently diagnosed with epilepsy?
You may feel all the same emotions that I felt and that is completely natural. I definitely encourage you to ask all the questions you have; there is definitely no such thing as a stupid question.
Is there anything else you would like to add?
Since my epilepsy diagnosis, I have managed to turn a life-changing event into a positive life-changing opportunity.
Not only am I now studying law, but I also am now back to weightlifting in the gym and I am currently training to run my first 10km in aid of Epilepsy Scotland.
I am now on lifetime medication for epilepsy but this has now limited me to one minor seizure in 14 months.
Also, I am able to partake in a full social life and my epilepsy is no longer a barrier to living my life to the fullest.
I would also add to utilise the support of your family and friends. Your diagnosis will be just as scary and new to them as it is to you.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at firstname.lastname@example.org or call 0141 427 4911.