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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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Epilepsy and Wobbles…

Weebles wobble but they don’t fall down. Epileptics do though!

I banged my head, hard, yesterday. We’ve all done it. I bent down to pick something up and stood straight again, cracking my head, hard, off the corner of a shelf. I don’t think I knocked myself out, but I did swear. A lot!
I then spent the rest of the day feeling pretty unwell. I couldn’t make up my mind whether it was just the fact I’d banged my head that was making me feel rubbish; or whether the thoughts that the bump might trigger a seizure were making me feel worse than I was. I felt sick. Or did I? I felt really woozy. Or did I? I couldn’t separate the feelings that go with a run of the mill, non-life threatening stupid accident with the feelings that I might have a fit. So, I did what I always do in that type of situation. I began to panic. 
My first overseas trip with work is coming up. I know that if I have a fit now, then the trip will be in jeopardy. Should I tell someone? Well that’s the biggie. Yes, I should tell someone but, and it’s an enormous but for me, I’m scared that it will cause mass panic when all I’ve done is bang my head on the bookshelf! So, I start to worry about that. It’s that trade off. I don’t want a fuss. I can’t stand fuss. I don’t want anyone running over here just because I’ve bumped my head! But what if I have a fit? What then? Wouldn’t I be glad that someone came round to make sure I’m ok?!
Oh, the thoughts. The in-head argument that’s going on. I hate that part of my epilepsy. I mean really detest it. Turning an innocuous occurrence into a battle in my brain. 
I’d had a really productive day up until the head-bang. I’d achieved a lot and was feeling pretty pleased with myself. The incident occurred and I retreated to the sofa where I could sit and be witness to the war. I tried to watch rugby on the TV, but couldn’t concentrate properly. I couldn’t decide whether it was because I was on the verge of a fit of whether it was because my head was really sore from cracking it off a wooden shelf. There’s that bloody panic again! If I take a painkiller, then the pain might dissipate and everything will be ok. But what if it just masks the signs and I feel better when I’m not and then I have a fit?! Aargh! I know somewhere inside me, that I’m being ridiculous. Panic is ensuring that I’m not thinking straight.
Should I tell someone? This entire question and all its ramifications have only arisen because the last time I had an episode, I was alone and helpless for a couple of days. Now, I’m in the position where I’ve agreed that I need to be in touch with people and that agreement is, and I don’t know why, making me feel like a helpless child. I’ve banged my head. I’m scared it’s going to result in a fit. Experience tells me it won’t, but I’m in the throes of panic so I’m not being reasonable. I know if I tell someone then they’ll be worried and I don’t want them to be. I don’t want anyone rushing round and creating a fuss.
The noise from the TV irritates me. I know I need to calm down. I get a glass of water and sit quietly for a few minutes. I’m regaining control. I’m ok. I got a fright, my head hurts like a bitch, but I’m ok. My day of productivity comes to an end. I have a cup of tea and I sit back down, turn the rugby back on and ignore the throbbing in the back of my head. The panic is subsiding and I’m glad I didn’t tell anyone I banged my head.
This morning when I woke up, there’s an expected bump on the back of my head and an unexpected bruise on my forehead. I feel fine though. I’m thinking straight, functioning well and there’s no trace of panic. Just a niggling question, that I must shrug off as I know I don’t know the answer. Did I have a fit during the night? I don’t know and I will have to deal with that.
So, epilepsy. Thanks for the reminder. You gave me a wobble. You threw a little obstacle in my way to let me know that you’re there and you can get me any time you please. Did you really think I’d forget? 

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Epilepsy and Stigma…

Stigma. A mark of disgrace. Shame. Why is epilepsy stigmatised so much more than other chronic diseases such as diabetes? 
I had my first seizure in 1986. My diagnosis came 2 years later. I was told at the time that a skiing accident was the most likely cause. I’d never heard of epilepsy. I’d never been exposed to it. I’d heard of diabetes because a girl at school had it, but epilepsy was a new concept for me. It was decades later that I learned that I was actually genetically pre-disposed to the condition and that, although the skiing accident was bad, it was more likely to have been the trigger than the actual cause. I think of it as being like a switch. The accident turned my epilepsy on. I sometimes joke that another significant bang to my head may switch it off! 
Up until 1970 in the UK, having epilepsy meant that I would not have been allowed to marry. In some poor parts of the world, epilepsy is still believed to be a sign of demonic possession or witchcraft. In fact, in some parts of the world “witchcraft” is used by traditional healers to try to free the sufferer from the symptoms. These cures often cause more problems than they solve but the lack of access to proper medical care coupled with an unwillingness to admit to suffering such a stigmatised condition, means traditional healing is the only option available. 
Education is key to understanding epilepsy and eradicating the debilitating stigma associated with the disease. In my experience however, such education is not readily available, the condition is far from well researched and understood and, despite us living in the 21st century, social stigma is still rampant. I still hear stories of kids being told to avoid those with epilepsy in case they catch it! I still hear stories that epilepsy is a sign of being mentally disturbed. I still hear stories that having epilepsy means the end of a normal life. Thankfully, in the UK at least, I no longer have to fear the probability of me being burned at the stake for being a witch, however I do still have to live with the stigma of having epilepsy. How I choose to deal with that, though, is entirely up to me.
Having a diagnosis of epilepsy does not have to signify the end of the world. There are a multitude of different types of epilepsy and this comes with an array of severity and there is not a one-size fits all method of dealing with the disease. Having epilepsy presents an opportunity to make a choice. I can choose to let stigma, fear and ignorance dictate my life’s course; or I can choose to educate myself (and others), push some boundaries and live a full life. Hobson’s choice, in my opinion. I don’t for one second mean to imply that the latter is the easiest course of action, but I do believe it to be the positive way to deal with the disease.
Yes, I have personally experienced a change in attitude toward me when a person discovers I have epilepsy. I don’t hide it, I’m not ashamed of it and the attitude of others helps me decide if I want them in my life. Over the course of my career in epilepsy, my attitude toward myself has changed too. Epilepsy is a factor in my life, but it doesn’t make my decisions for me. I sign waivers to acknowledge my acceptance that certain activities could be considered more dangerous for a person with epilepsy; but as long as I’m not putting others into a dangerous position without their knowledge, then it really is up to me what activities I partake in. 
Epilepsy seems to have struggled to ease its way into mainstream acceptance. Unfortunately, a seizure is not a pretty thing to witness. It’s distressing, involves violent jerking, it sometimes involves leaking bodily fluids and can be accompanied by terrifying screams. It’s not a delicate faint. It’s a very physical reaction to an electrical disturbance in the brain. I personally think this is partly why it isn’t more openly discussed and, for want of a better word, advertised. Only very very recently have I begun to see famous faces talk openly about their experiences with epilepsy. In the main, these are sportsmen. I applaud this openness as it’s a way of demolishing the demons surrounding epilepsy and removing the stigma. I hope that more and more people start speaking up about their experiences and that it provokes discussion and leads to more research and better understanding.
Epilepsy is not the domain of the feeble-minded. It doesn’t restrict itself to a particular set of people. It’s certainly not contagious. Avoiding talking about it, will not make it go away and being embarrassed by it will not cure it. Talking about it, acknowledging it and being educated about it, won’t miraculously solve all problems, but it will help to diminish the stigma surrounding epilepsy.
I’ve dived with sharks. I’ve skydived. I’ve ridden a jet ski. I’ve skied. I’ve travelled the world. Trekked in jungles. Swam in clear, warm tropical seas. I’ve ridden the worlds highest amusement ride, the Big Shot. All this and more while living with a diagnosis of epilepsy. The only restrictions in my life are the ones I place on myself. Having epilepsy means my world is different and I’m more than ok with that.