Men and Epilepsy

Thomas - Epilepsy Ambassador

I am proud to be someone who has his epilepsy under his control, but there have been a lot of challenges for me in the past ten years. When I was diagnosed with epilepsy, I didn´t have a good idea of what it was really going to mean for me. My doctor talked to me mostly about medical aspects, and he didn´t know what would happen in the future for me. I wish we would have discussed more of the life issues that would become my new situation.

The age I was when I had my first seizure and was diagnosed with epilepsy affected my experience. I felt the loss of my personal freedom acutely. I had to stop learning to drive until I had seizure control, and I didn´t know how long that would be. I had to look at my watch all the time to make sure I took my medication on time. I had to make sure I got enough sleep. My friends were able to do what they want. I eventually stopped going out, and this isolation was difficult for me.

I also didn´t know how having epilepsy would affect my chances for a romantic relationship. I was so busy dealing with my epilepsy that I didn´t have much time to pursue romance, but I did think about it. The fear of rejection was too great, and I worried that the stress would cause a seizure.

I now have a wonderful girlfriend who I met through an epilepsy organization, and I value all that we´ve shared in the past few years. Because she was diagnosed with epilepsy as a child, it was easy for her to understand my situation. She hasn´t had a seizure in more than 8 years, and that gave me hope that I would gain better seizure control. We´ve shared a lot of our experiences with epilepsy and just having someone to listen makes it easier.

I value my health so much more these days and keeping to a routine helps me feel better. My advice to someone diagnosed with epilepsy in their early adulthood is don´t risk your health. It´s a time in life where you are pushing the limits and you might want to be staying up late drinking and going out to clubs -- but it´s not worth it in the long run. I was struggling for seizure control already, and not getting enough sleep may have triggered more seizures.

Today, my life is healthier. I have a doctor that I feel comfortable with, because he takes the time to ask me about everything in my life. Because epilepsy is not easy to live with, this makes a big difference for me. I understand that doctors are not magicians, and I appreciate when he tells me that he doesn´t know. We work as a team to see what works for me.

When I was interviewing for jobs, I had to take my epilepsy into consideration. For example, transportation is an issue - I need to make sure that I can get public transportation to my job. Since it´s likely that I am relocate, it´s also important to select a place to live that´s convenient to both work and other amenities. I have some advantage with interviewing, such as speaking three languages, but I also must ask about whether the job requires any driving or not. I am getting closer to having a seizure-free year that will allow me to start driver´s training, but it will still be a while before I can become licensed.

Sometimes planning for the future is hard because of the uncertainty, but I talk to my doctor about working and living on my own, and he listens. Now that I have a job and will be living on my own, I feel like I have made a lot of progress towards planning for the future. After I settle in to my career, save money for a home and feel more assured about my seizure control, I will be able to make more plans. I hope that it will include having a family and I´ve even talked to my doctor about considerations for people with epilepsy about having children. Just being able to plan for the future is a great step for me, and as a man living with epilepsyive done it through the support of family, friends and my doctor. I encourage you to learn to live with epilepsy the best you can and find support in your community.