Epilepsy and “Epileptic”

I’ve mentioned time and time again how that “[insert thing here] doesn’t define me” often pisses me off. One of the current gripes is how using the word “epileptic” is offensive to some people.

Okay. Fine. If you wish. But the alternative they’re saying is either “I have epilepsy” – which has a grammatical difference of you having epilepsy as opposed to epilepsy having you, so … again, whatever – or “I have seizures/ I am a person with seizures” (if you’re on medication and controlled, um, no, actually, you don’t).

You read over and over “I am a woman. I am a wife. I am a daughter. I am a mother. I am a [insert job].” etc etc, but “I do not let epilepsy define me” or “I do not define myself by epilepsy.”

Here’s my personal – MY OPINION – response to that:

Bullshit.

If you’re defining yourself by your choices, then “I am a woman” and “I am a daughter” do not apply, because those weren’t decisions you made to create your identity. If you define yourself by the essential being then “I am a mother/wife/worker” can’t count, because those are things you chose to do, rather than things you were born with.

You did not choose epilepsy, no. However, you DO, no matter how often you keep posting that you don’t, make life choices based on your epilepsy. Maybe you’re not as cautious as me, but if you take daily medication/have surgery/wear a vns/etc you’ve made that choice because of the epilepsy. If you DON’T take medication because you feel that the risk of seizures is less than the side effects of the medication or because of the cost of the medication, seizures were a part of that decision, as well. If you decide to go deep sea diving, I imagine you at least gave it a little thought (since tons of you post “EVEN THOUGH I HAVE EPILEPSY I [insert awesome thing here]” all the time). If you drive/don’t drive. If you drink/don’t drink. And so on and so forth. Epilepsy might not be the ONLY thing that defines you, but it IS a part of you. At the very least, I would say it is as much a part of you as your job choice! Or your hobby! “I am a foodie!” “I am a crazy cat lady!”

When you tell me, “I don’t call myself epileptic because it’s offensive” that is straight up saying the term itself is offensive. Since the definition of “epileptic” is “a person who has epilepsy,” which I do, you’re saying that what I am is offensive. I AM EPILEPTIC.

It is as true as I AM A WOMAN. (Not: I am a human with a vagina and uterus.)
I AM A TEACHER. (Not: I am a person who stands in front of people and lectures them on a topic they don’t know.)
I AM A DAUGHTER. (Not: I am a human with a vagina and a uterus who came from two other people.)
I AM A FOUNTAIN PEN ADDICT. (Not: I am a person who has fountain pens. Because hahahaha, that’s not even close.)
I AM A CAT PERSON. (Not: I am a person who has cats. Because there are people with cats who prefer dogs.) etc and so forth.

No, the word doesn’t have a positive connotation, but neither does “I have seizures” or “I have epilepsy.” Do I like having epilepsy? No. It sucks. It really does. Am I afraid of my epilepsy? Sometimes, heck yes. Am I epileptic? Yes, I am. And that’s not going to change. It is part of what I am. It is part of WHO I am. It is part of where I am today; it is part of where I have been and where I will go. So I am going to own it. I’m not going to pretend I’m better than my epilepsy, because we’re not two different things. It is IN MY BRAIN. It is me, I am it. I’m probably going to be a stronger person because of it. Have life experiences I wouldn’t have without it.

But, if you prefer “I have epilepsy,” fine. That’s your business. But do NOT come at me because I say “I am epileptic” like I’m insulting the whole of the community. Being epileptic does not mean being the embodiment of epilepsy. Or that I’m promoting epilepsy. Or I am insulting epileptics. (Because I’m owning it, I use it to describe myself. Personal choice.) It does not mean something bad to ME. If it means something bad to YOU, that’s your problem.

And for the LOVE OF GOD STOP MAKING ME FEEL LIKE SHIT BECAUSE I HAVE DECIDED TO OWN MY MALFORMATIONS!

About a woman with breast cancer and the culture around that, not epilepsy, but it really spoke to me.
About a woman with breast cancer and the culture around that, not epilepsy, but it really spoke to me.
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