Living with epilepsy
I remember back in 2006, when I was diagnosed with epilepsy. Mum told me what I could and couldn’t do; it didn’t mean much because, I mean, what 11 year old wants to learn to drive a car? Or, what 11 year old wants to go out traveling alone?
It all seemed unimportant to me and, I didn’t really understand what Epilepsy was. In school you learn about Cancer patients, Asthma, Diabetes, you know? But not once did we ever learn about Epilepsy or seizures, and most schools still don’t. (But that is a topic for another day.)
Learning to Drive
Learning to drive has always been a big thing for me, mainly because I can’t do it. Epileptic seizures are considered the most frequent medical cause of collapse at the wheel. This includes all seizure types such as tonic clonic seizures (which I have), absences (have those too), myoclonic jerks, simple partial seizures and auras or warnings, even if consciousness is not noticeably impaired.
Owning up to disability
It was only when I turned 17 that I realized I wasn’t going to be able to drive. It wasn’t that I just had to be a little careful, or I had to make sure someone was with me. Nope I couldn’t , period. It hit me that I was going to be getting the bus and the train everywhere when my friends would be driving places. I realized I would be stuck walking in the rain when my friends could just hop in their car. When it finally sunk in, it made me feel really trapped.
In fact, the more seizures I had, the longer I had to wait before I could get lessons to learn how to drive. I now have to wait until I am at least 28 years old before I can even be considered. I still have to tick the little box on letters that says I am disabled. And, I am still being discriminated because there is stigma about Epilepsy.
Free travel options
When you can’t go anywhere you have time on your hands. So, I did a lot of research on traveling with seizures, and I came across information on the possibility of free travel depending on your condition. I went to my local county council and I asked about an Epilepsy card. It turns out Epilepsy ID cards are only available in America, not in England where I live. However, I am entitled to what is called a “Gold Card”. (fancy right?)
A Gold Card is a travel and discount card for over-60s and people with certain disabilities.(not so fancy) It turns out I fall into the right category. With the card I can travel free on buses and I also have a rail card which gives me discount on trains.
Once I was able to put things into perspective, I realized how much better off I am with free travel rather than risking driving. And just think of all the money I would be spending on driving lessons and insurance anyway!
The rules for driving differ from state to state and country to country. Where I live, I’ll need to remain seizure-free for at least a year in order to carry a license. Having to go seizure-free for an extended period of time like this can be extremely tough if you have a lot of seizures or have your medications changed a lot. If your seizures aren’t under control or you are still changing medications regularly you may want to look into whether or not a travel card is available in your area. If you decide to go this route, it’s likely you will need to get a Doctor’s note as proof of your condition.
Don’t give up
As a final note, I would like you to remember that most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. And as Audrey Hepburn said, “I believe in being strong when everything seems to be going wrong.”
How do you handle driving?
I’m curious, do you drive? If so, where do you live? Have you decided not to drive? How do you handle getting around? Comment below so everyone can participate in the conversation.
25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England.
Emily’s Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10.
Based in UK.