Epilepsy and Labels…

There is a difference between having something and being something. I have green eyes; I’m not a green eye. I have a broken arm; I’m not a broken arm. I have epilepsy; I’m not epilepsy. There is a huge difference between having and being, that said, I do use the phrase “I am epileptic”. I also use the phrase “I am brunette”. For some reason that doesn’t seem to conjure up the same negative connotations that announcing I am epileptic does. Why is that?

There is an entire minefield out there called “political correctness”. It’s huge. There is such an enormous amount of pressure to use the correct terminology to refer to certain conditions that it’s a wonder anyone talks about them at all! Sometimes it makes me really angry that there is more discussion about whether someone “is epileptic” or “has epilepsy” than there is about treatments. And it seems to change every 5 minutes. No-one is blind anymore, they are “visually impaired” or should that be “visually challenged”? I don’t know! Lord forbid you call anyone disabled! Yet, when I was growing up, there was absolutely nothing wrong with calling a person what they were. Nowadays, though, it’s a label apparently and we can’t be seen to be labelling people!

I’m not sure how calling a person what they are, is labelling them. Why does it have to be negative? I am brunette – call me brunette. I am epileptic – call me epileptic. I’m not offended. Why should I be? I am, after all, a brunette epileptic!! Is the fear of getting the term wrong, actually contributing to the lack of open discussion about certain diseases? Are we so scared of saying the wrong thing that we say nothing at all? I don’t want to use the wrong “label” so rather than talking to you about your disease, condition, disability, challenge (whatever!) I just won’t say anything at all. Then that will save me getting embarrassed and you getting riled up because I may have used a term that was perfectly acceptable in the ‘70s, ‘80s and beyond but is shunned today.

I would much rather someone talked to me about epilepsy and acknowledged it, than kept quiet because they don’t want to offend me by calling me epileptic. Maybe I’m missing some huge point here. And I open myself up to correction.

Being epileptic is part of me, sometimes it’s a huge part of me and sometimes it’s not. 

To my simplistic mind, there is no offence in either of those statements. However, in some quarters the first statement is a label and we don’t want to label people. Who decides that? I know that I am over-simplifying things a little. I recognise that people are people and everyone is entitled to live a label-free life. What I don’t seem to be understanding is what makes a label negative, if the statement is true? I am not the sum total of my labels, but what if we stop calling them labels (to me, a label is a physical thing that is attached to another physical thing) and start calling them adjectives. There is nothing wrong with adjectives is there? Now, don’t get me wrong, I absolutely understand that there are some adjectives out there, that are utterly offensive and I want no part of them; but describing me using a different form (i.e. changing the ending) of the name of my disease, just isn’t offensive in my mind.

I seem to be ranting. I would much rather people talked about epilepsy openly in the same way we can talk about flu. Ignorance is far from bliss. I want to talk about epilepsy. I want the whole world to realise its existence and for those living with epilepsy to be able to talk about their experiences without fear of rejection. I sometimes find myself trying to choose a different term to describe my own life with epilepsy because I don’t want to offend anyone out there by having them think that I’m (negatively) labelling them. If I call you epileptic, then it’s not meant to be negative. Calling someone something, doesn’t make them that thing. You can call me a dog. It doesn’t make me a dog. It’s only negative, if I allow it to be negative.

Epilepsy is part of my life. It is a consideration in everything I do. I wrote in my last post about having wobbles. Yes, I have them. After reading the post, someone got in touch with me and assumed that my work trip was off. That I wouldn’t be going. I replied that of course I’m going, I mean why wouldn’t I be? I don’t think they got my post at all. My post was trying to demonstrate that I had a wobble. That I thought I was going to have a fit (ok seizure!) even though common sense was dictating that I wasn’t. I’d bumped my head is all. I was trying to demonstrate that while I do believe that having epilepsy is not the end of the world, I’m not always positive about it and that it does scare me. When I’m having a wobble, the last thing I want to think about, is how to describe my feelings in politically correct terms that won’t offend the casual reader or another person who is living with epilepsy. I want to be able to pour out my feelings raw and un-censored. Being permanently politically correct does not lend itself well to this. I had to make a decision. A decision that every human being has to make for themselves. I decided that I had to be true to myself when I began this blog. I decided that it has to be a true representation of how epilepsy makes ME feel. In order to do that, I have to use words and phrases that I use and I have to hope that this blog reaches people still holding the intentions that are behind the words I use. I guess only you, the reader, can be the judge of that.

Writing this blog has helped my confidence significantly. Epilepsy has not played a starring a role in my battles with low confidence, it plays its part though. My confidence was ruined long before I was diagnosed with it. But writing this blog helps me to put things straight in my own mind. Reaching out to others to help raise awareness about epilepsy and its effects, helps me enormously. So, please do not let words and the misperception of a negative label prevent discussion about epilepsy. Talking is good. It’s a way to raise positive awareness about epilepsy. It’s a way to dispel myth and hammer home a firm belief that a diagnosis of epilepsy does not and should not signify the end of life as we know it. All of us with epilepsy have to find a route through it. Talking about it, sharing experiences – good and bad – and generally being unafraid to acknowledge its existence is a great way to move forward.

My name is Kirsty and I am epileptic.

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