Category: Uncategorized Comments: 9 comments

I had an interesting conversation the other day with my sister-in-law, Ali. She is a “care-giver” in England and she is a regular reader of my blog. She asked, “Why do you always refer to yourself as ‘epileptic?’ You are not epileptic. You have seizures.”

I should point out that Ali has been trained by the English “ETTAD,” or European project to Enable Teachers and Trainers. Their website (1) states “Terminology is important, because words reflect our attitudes and beliefs.” It goes on to state that, “It is dehumanizing to talk of people in terms of a condition. Do not talk about a dyslexic or an epileptic – it is far preferable to say he has dyslexia/ she has epilepsy. (Ibid.)”

It’s a fair point, although, presumably, none of these people are actually living with the conditions they are talking so nobly about. The Epilepsy Network (a “Facebook” page to which I belong) recently did a survey of actual seizure patients where they asked (2); “EPILEPTIC” – Some don’t like when this word is used to describe someone with Epilepsy. Some don’t mind when this word is used to describe someone with Epilepsy. What about you? Do you like when the word “Epileptic” is used? Do you not mind? How does it make you feel? POST BELOW! The results were interesting. Of the fifty-on people who responded, forty-two said they “didn’t mind.” Only nine were against it.

Does this mean that the term is fine? I really don’t think so. I believe that we, as people with seizures, learn many ways to deal with what is thrown our way. We desensitize ourselves to the world around us; to the jokes, to the terms, to the bosses and coworkers. We desensitize ourselves to the sensation of being covered in blood and urine in a crowd. A term is the least of our problems. But this doesn’t make it ideal.

I am going to stop saying that I am epileptic primarily because the term “epileptic” has so many connotations that most of us are actually afraid to use it in conversation. We SAY the term is ok — yet we don’t want to tell employers we are epileptic. We are slow to tell even our closest friends and family. We certainly don’t want to get into conversations with people we just met about it because of how they will react. The truth is that we don’t like the term at all.

In that facebook survey, my favorite comment was made by someone named “Christi Skinner.” She said, “I don’t mind epileptic, what I do mind is “fits” or “episodes”. And I HATE when people say, “you look like a fish flopping around”.”

Personally, I hate the term ‘fits.’ Little kids throw ‘fits’ and it is such an accepted term that newspapers throw it into headlines (though this seems to be a U.K. thing):

“Epileptic woman woke up from severe fit to find strangers laughing at her and filming the ordeal on mobile phones (and police refuse to investigate)” (3)

“Two burglars raided woman’s home while she had epileptic fit” (4)

“I got fined £50 after epileptic fit in Scunthorpe town centre – because I was late back to my car” (5)

An odd thing happened recently in China. The Chinese actually changed the word. I can’t type Chinese characters (nor would I understand them if I could), but the actual word for epilepsy was changed to get rid of the stigma altogether.

According to an article in “Mind Hacks” (an online magazine), people in China who have seizures have suffered from persecution and inequalities for centuries (6). The earliest mentions of the affliction combined the words “brain” and “madness” and the term has since always had the stigma of a mental illness (ibid). The new term, which has only really caught on in Hong Kong thus far, eliminates the “insanity” part and simply means, “brain epilepsy disease” (ibid). Nice to know people are paying attention, if only in Asia.

I’m not on the bandwagon for everyone else to stop saying “epileptic.” That’s a choice for an individual. But it is an interesting debate. Personally, I have already stopped. For me, I think Ali’s ETTAD got it right: I do not wish to be defined by epilepsy. It is not who I am. Granted, I do have seizures but I have a lot of other things, too. My kids, my wife, my job; these are all things that help define me. Frankly, I would rather be defined by any of them than by falling down.

1 – http://uk.ettad.eu/understanding-disability/disability-etiquette
2 – https://www.facebook.com/theepilepsynetwork/posts/563455370382988
3 – http://www.dailymail.co.uk/news/article-2719825/Epileptic-woman-woke-severe-fit-strangers-laughing-filming-ordeal-mobile-phones-police-refuse-investigate.html
4 – http://www.independent.ie/world-news/europe/two-burglars-raided-womans-home-while-she-had-epileptic-fit-30511907.html
5 – http://www.scunthorpetelegraph.co.uk/got-pound-50-parking-fine-fit-late/story-22908688-detail/story.html
6 – http://mindhacks.com/2012/04/24/a-new-symbol-for-epilepsy-in-chinese/

9 comments to I AM NOT EPILEPTIC

  • Ali  says:

    Fantastic Mark x

    • Mark Hawkins  says:

      very kind of you, ali…i was worried you might not like it…


  • Tadzio  says:

    In the general population, a majority of individuals who experience instances of seizures are not people with epilepsy (starting with the word epileptic avoids that wordiness about epileptic and non-epileptic seizures often being confounded).

    I’m trying to remember the English usage guide that referenced Bernstein (Thistlebottom), or Mitchell (less than words can say), in distinctions of nouns & adjectives versus phrases applied to a person who is grouped with other individuals (individual is a Western idea?).

    Quoting people with diabetes about being diabetic,

    “to make an issue over what you call someone with the disease, you take the focus off the disease itself”, to, “Person with diabetes, although I’m sure its advocates have the best of intentions, smacks of the kind of gooey, patronizing political correctness in speech and writing that I actually find quite exhausting and exasperating. (Oh, you’re a person first and that’s very important… why not pat me on the head while you’re at it?)”

    Some of my first hand problems of using the phrase “with epilepsy” are early encounters of
    “Some temporal lobe epileptics are extremely wordy.”
    “Some individuals with a temporal lobe epilepsy are extremely wordy.”
    (One gently has to curb the patient’s verbosity, Niedermeyer, page 160, to prevent a 30% increase?).
    The indefinite article is for one of the epilepsies versus epilepsy (being politically correct with flavours of ice cream instead of just the ice cream, Ernst A. Rodin, page 101, “How Proust Can Improve Your Practice of Epileptology”).

    Divide and oppress?
    “It is doubtless that people who smoke form relationships with fellow smokers.”

    No time for a good edit here, as 5 agencies are after me by the end of this week. If they were independent, the frequency of such events together would be around one out of 600,000,000 times, so something really stinks. The law says they have to put everything in writing, and they are refusing, saying everything is to be said over the phone, so as “to streamline operations”. Too busy attorneys for anything else, say the agencies don’t ever do that, as even the early steps must be in writing by law. Streamlined operations versus reasonable accommodations??? Guess which one holds sway?


    • Mark Hawkins  says:

      While I certainly understand your comment and sentiment, I still believe there is something to be made in this argument, especially when talking about a disease like epilepsy, which, unlike diabetes, has a definite societal stigma.

      You’re right: we are absolutely talking about trying to take focus off the disease since it, after all, fills the listener with images that the masses of history have taught them which we know now to be incorrect. Those of us who suffer from seizures don’t want spoons in our mouths, we do not have mental problems (at least not as a result of epilepsy), we don’t all need to be wearing hockey helmets (I just heard that one last week; “If you were really epileptic, wouldn’t you have to wear some sort of helmet?”)

      Sorry about your continued hardships. Stay off the phone, obviously. If one of those “agencies” manages to get you, hang up immediately. Do not engage in conversation. Get anything they want in writing. They may want to “streamline operations” but that does not mean you have to let them.

      Hang in there. You’ll make it.


  • Maria Wilcox  says:

    I completely agree with this. I wish I could facebook share this! I have epilepsy, but I choose to not let it define me. It makes me cringe when I hear someone label me as an epileptic. I also hate it when seizures are called fits and spells. I think some may consider it to be a nicer way to say seizure, but I don’t agree. Thank you for sharing this.

    • Mark Hawkins  says:

      There should be a button the left of the blog post that says “share.”

      If you don’t see it, please let us know.

  • Maria Wilcox  says:

    I only see an option to like the page on Facebook directly below the reply/comment box. I’m on my mobile- not sure if that has something to do with it or not.

  • Emma  says:

    I also have Epilepsy and agree with it not defining me as a person, I don’t agree with just I have seizures. I hate the word fits too. Diabetics have seizures, so do alcoholics and there are many other reasons people have seizures.
    I am Epileptic and happy to tell anyone if they ask any questions if I have a Epileptic seizure in front of them. I suffer from 3 forms of Epilepsy and even my 3 young children have grown up not hidden from truth. People need to be educated young and old as the majority do still shy away from it and in sone cases think it’s catching.
    Trying to get employment is ridiculous if you tell the truth on your application so you have to lie and watch the lok on their face as you tell them you have Epilepsy In the interview knowing you will not be offered the job.

    • Mark Hawkins  says:

      I appreciate you taking the time to make this comment and i agree that it is unfortunate that most of us lie on employment applications. I certainly have. Good luck and thanks again for both your support and the fact that you are being so open about your seizures – we need more people like you out there.

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