I can’t help but think about what people see me as now that I have epilepsy. It’s something that crosses my mind all the time. Before that, I considered myself a “regular person”. I led a regular life, doing regular things, not even imaging what was coming for me. And then it did.
It was my choice to make it public knowledge that this was all going on, and I have no regrets. But does that define me in people’s minds? In many of the conversations I’ve had with people, they often refer to their “friend who has epilepsy” and tell me their story. Which is great. It’s something I really value. I know that people are always trying to help and make me feel like I’m not alone. It really does help. But I can’t help but realize that it goes the other way around. I’m going to be in that story, too.
Am I “that girl who has epilepsy”? Because there’s so much more about a person than one aspect of their story. When I first moved to the town I live in now, I became a lifeguard, and many of the other lifeguards were impressed (I guess?) by the fact that I was a division 1 swimmer. I was often referred to as “the D1 athlete”. It was so much fun! I got a kick out of it. Some of the parents actually came up to me and said “Are you the lifeguard who swims D1?” It was awesome. It’s a pretty cool thing to be known for.
That part of my story has come to an end and now there’s another chapter. And I don’t want to be the girl who “has epilepsy”. I can’t help but think that that’s how I’m seen now. It would make sense, though. It’s a situation that not a lot of other people are in. It’s an important part of who I am. I just don’t want that to be the most notable thing about me.
I want to be referred to as “the girl who works at NBC” or “the girl who swam division 1″. Even “the girl who kicks epilepsy’s ass”.
There are some days when I feel completely cured (yes, I know that’s not possible), and there’s others when I literally feel like it defines me. There’s not really any in between.
I decided to share my story because I think it’s important that other people understand what it’s like to have a chronic disorder. Epilepsy can be perceived as just a physical disorder, but it’s so much more than that. Even though a lot of my stories are embarrassing and probably make me look weak, it’s worth it if one person that reads these posts sees a person having a seizure in public and knows what to do.
I know a lot of people that go through terrible things (pretty much everyone does) but are embarrassed or uncomfortable sharing it. Maybe I should be, too. Sharing comes with consequences. I didn’t realize that until I shared my story about epilepsy.
I can only hope that epilepsy doesn’t define me in other people’s eyes. It has certainly felt like it defines me on a lot of days, but it shouldn’t feel that way. I’m going to do everything in my power to make sure I never feel that way again. But I can’t stop other people from feeling that way.
I guess I don’t really mind being anyone’s story. A majority of the stories I hear about other people really do make me feel less alone. I’ve felt that way on so many different occasions, and first and foremost, I want to be that for someone.
I guess if others define me by my epilepsy, I can’t do anything about it. But I don’t mind being a story if it helps someone else feel less alone.