Living with epilepsy: “It’s hard, but you can still enjoy life”

What are the biggest difficulties you face?

Julia: “Thankfully, because I am very open about it, everyone in my environment has always understood it. But I have sometimes experienced that during a job interview people looked at things with difficulty. Like: how are we going to do this? In addition, it also sucks up your energy , which meant I had to stop playing football and my dance training. School is also a lot more difficult, because I am absent for a while after an attack. Then you miss a lot and that is annoying.”

Maxime: “I especially find it annoying that I am very dependent on others for transport, since walking to the tram or bus can be very dangerous. In addition, I have a twist in my right brain, which makes the motor skills in my left arm worse. I was also bullied a lot by classmates because of my epilepsy. Fortunately, everyone now has a lot of respect for me.”

What do you think are the biggest misconceptions about epilepsy?

Julia and Maxime: “People often think that there is only one type of epilepsy, i.e. someone who is knocked out and then begins to struggle to the floor. That is not correct, because there are different forms.

Another big misconception is that it is often thought that someone with epilepsy immediately has an attack of flashes of light, but that is not the case. For example, only five percent of people with epilepsy are sensitive to flashes of light. People also sometimes think that you should tell someone if they have epilepsy. But it’s something in the brain, so you can’t see it on the outside.”

You started a year and a half ago with a Youtube Channel on which you post vlogs about your life with epilepsy. What are the most important things you want to convey to viewers?

Julia and Maxime: “There is so much more to epilepsy and we especially want to create more awareness about it. Our main message is: you are not your epilepsy, but still just yourself. Of course you have to take your epilepsy into account, but you can still enjoy life and do your thing.”

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