Being an epileptic my entire life, I have faced many stereotypes. As I’ve grown up, it has become harder to tell people that I am epileptic because of the labels that are put on me. Even though I am an active epilepsy advocate, I still struggle with being open about my diagnosis. In my opinion, this is because of the “Oh, but you don’t fall shaking? That’s barely even epilepsy” reaction.
I’ll admit, when I was in middle school, I would say things like this, but I wasn’t the girl I am today. I wouldn’t stand up for myself. I would let kids my age tell me things about my condition that would terrify me, and I didn’t know how else to clarify that I don’t have the big scary seizures that you see on TV. Once I got to high school and started to explain my type of seizure, people would be dismissive. They would act like it was barely epilepsy. It made me feel like I couldn’t share my story because others out there have it worse.
That’s the harsh reality of high school: people will judge you, dismiss you, and nobody will listen to you unless you make your voice heard. It’s so complicated to explain to people (especially those who don’t want to listen) that even though I don’t have grand mal seizures, I still have seizures. Just because you can’t see it with the bare eye doesn’t mean my seizures don’t exist. I may not have to experience the struggle of having a grand mal seizure, and I am eternally grateful for that. The girls I have met that go through that are superheroes to me, but I still experience the side effects of having epilepsy. My memory is still not the best. I can’t drive. I go to a billion doctor appointments and still have to deal with the stigma around seizures.
The point of this blog is to teach people the importance of listening. Try to understand their point of view. I still struggle to tell people that I have epilepsy because of how I’ve been dismissed. I hope that through this blog and miloandme, readers will notice that not every diagnosis is the same. Not every seizure is the same. So much goes on behind the scenes that most people will never understand, so try and sympathize before dismissing :))
- Sofi <3