The Word That Bothers Me as a Person With Epilepsy

Epileptic. When I hear this word, right away, I feel judged. I feel stigmatized. I feel different.

The first time someone called me an epileptic, he and I were parting ways after spending the afternoon together. I had recently revealed to him that I have epilepsy and that I take medication for it. When I become close with someone, I try to keep my epilepsy a secret for as long as I can. Then, there comes a point when I have to explain why I need to be home by 8:00 at night, why I don’t drink alcohol and why I always need a ride. There comes a point when I have no choice but to explain that the bruise on my forehead came from hitting my head on the granite countertop as I fell, having a seizure.

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In response to hearing that I have epilepsy, he said, “I’ll have to be more careful around you now that I know you are an epileptic.” Right then, it stung. I wanted to open my mouth and tell him it didn’t feel fair. As the word slipped from his lips, it sounded wrong. At that moment, I wasn’t entirely sure why. I wanted to tell him that my stomach just dropped, and on the inside, my smile fell. I didn’t. He had no clue that his words had hurt me. He just thought he was being kind and protective. Instead of speaking my mind, I thanked him for understanding.

At the time, I was less aware of the stigma surrounding epilepsy. I just knew I was insecure about my disorder. I just knew I was scared to share this part of me with others. I was scared of being teased. But, I did not know that my feelings were valid. I did not know that I deserved to feel accepted and respected regardless of my epilepsy.

To me, being called an epileptic signifies that the speaker is separating me from him or herself. The person is separating me from others he or she knows. I am no longer “one of them.” I am no longer an equal. I am someone with an invisible illness that keeps me out of the “normal” category in the eyes of peers. Once I am called an epileptic, I have a label. I am saddled with a name other than my own. I question my worth as a human.

I am not an epileptic. I have epilepsy. I am a woman with epilepsy. I am more than my seizures. I am more than the side effects my medication causes. I am a sister and a daughter, I am an educator, I am a dog mom, I am a painter and a poet. I am more than an epileptic. While not everyone understands how much a label can hurt an individual, I know in my heart that I am not defined by my epilepsy.