Am I an epileptic, or a person with epilepsy?

Once, while online, I was speaking to a woman who also had epilepsy and I referred to myself as an epileptic. I stated “I’m an epileptic, I have been my whole life.”

“WHAT?!” she cried (if you can call it crying in a digital world)

“I’m an epileptic.”

“No! You’re a person with epilepsy. A. Person. With. Epilepsy.”

I’m not going to say how long this went back and forth. To be honest, it doesn’t make me look like that good of a person, and it’s all a bit ridiculous. However, it does bring up the question, are you an epileptic, or a person with epilepsy? If I’m honest, I think a “person with epilepsy” sounds like someone that has leprosy. Someone who is miserable and isolated. Someone who should be put a part from a normal person. An epileptic is just another adjective. It’s just one more thing that makes me a whole. Like if I had diabetes, I’d be called a diabetic. These are all in the same realm. I wish I didn’t have epilepsy, but I’m proud to be an Epileptic. Being an Epileptic means I’m an advocate, I’m a supporter, I’m strong, I’m educated (because lord knows it takes a lot to know even the slightest bit about epilepsy), I’m supported by those like me, and undersupported by those researching. Being an epileptic says so much more than being a person with epilepsy.

I am proud to be an epileptic. I’m an epileptic, a traveler, a volunteer, a student, a friend, a relative, lover, a fighter, a reader, a writer, a knitter, a biker. I am so many things. To call myself a person with epilepsy seems to make it so much more. It’s like the handbag I’m always carrying around. It’s my luggage. I’d rather lose my luggage at the airport and go to the beach.

What do you think?

As always, please donate to our cause. My best friend is running a marathon to make arguments about these sorts of things null & void. To properly treat Epilepsy would be a dream come true for me and many others. Help make that dream come true and skip your latte. Give to our fund.

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9 Comments (+add yours?)

  1. Miriam
    Oct 16, 2010 @ 00:43:12

    You are whomever you wish to be. The term seems not overly important–I’m not all that crazy about either, but I suppose it has to have a name. I never thought about epilepsy and leprosy sounding alike, but they do. Whenever I think of the word epilepsy, it always comes out epiloopsy in my head. Perhaps I should refer to myself as a person with epiloopsy.

    Reply

  2. seakats
    Oct 16, 2010 @ 03:33:30

    I refer to myself as epileptic. I’m not a person APART from epilepsy. Epilepsy is part of who I am. You’re right, it’s like carrying it around like luggage the other way. When I was in special ed training, they taught to NEVER say “epileptic” or “diabetic.” I think it’s hypersensitivity, but some people think it’s a royal no-no. But I’m not one of them. I am epileptic. It’s integral to who I am.

    Reply

  3. Ann
    Oct 16, 2010 @ 09:22:08

    I say either is fine. Whatever a person is comfortable with.

    I am epileptic. I have epilepsy. My father is diabetic. He has diabetes.

    We have enough to deal with in the condition without picking on each other over semantics.

    Reply

  4. Gev
    Oct 19, 2010 @ 23:26:08

    Some would say that “Epileptic” isn’t really people friendly. I’m not partial to either phrase. But I do know that when I talk about it, I refer more to it as more of what I have. Like it’s a personality trait, I say things like “Yea, I have Epilepsy,” or “I don’t know if you can tell, but I have Epilepsy.” Things like that…

    That way they understand that Epilepsy is apart of who I am, and it’s in my life struggles. If they think it’s nothing and they are insulting it – that’s their issue. But when I tell them, it’s to bring more ‘awareness’ that there are people that are around them that might be struggling with something, like Epilepsy, that they are insulting.

    Reply

    • Meg
      Oct 20, 2010 @ 17:17:33

      I guess I just don’t know how “epileptic” isn’t people friendly. Maybe I’m not PC enough, maybe I’ve had it for too long and as it’s always been called that, it’s my comfort zone.

      I sometimes say “I have epilepsy” but in general I say “I’m an Epileptic”. I feel more comfortable and I feel like I own it. Maybe I’m just silly ๐Ÿ™‚

      Reply

  5. Tif
    Oct 23, 2010 @ 15:02:45

    Sounds like someone who reads teacher/education material. I’ve had that drilled into my head this whole past semester in my Special Education course. It’s a student with a disability never a disabled student, it’s a student with autism not autistic student, it’s a student with ID not ID student *because* the disability doesn’t define them. I can see where they’re going with it and why they try to change the terminology, especially with children/teens. Personally, I think it’s less for the particular student and more for those around them.

    Reply

    • Meg
      Oct 23, 2010 @ 15:15:43

      I’d have to agree. I think we’re too busy worrying about what other people think, instead of worrying about the actual situation. The child *is* autistic. If the child feels better as “a child with autism” then say that, but otherwise… call them what they want to be called.

      Reply

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