A hidden disability - with a twist!

When I was a junior reporter on a local newspaper (years ago - it was my first job), the sports correspondent said: "You don't look like someone who has epilepsy."

What???

I never got to the bottom of how he thought people with epilepsy should look. Perhaps with people in front of them ringing bells and shouting UNCLEAN?

Of course I asked and stared at him but he just blushed deeper and deeper until our news editor sort of pulled me off him and changed the subject. As I say, that was years ago - getting on for 40 - but public attitudes to epilepsy haven't changed much.

There is no physical 'look' attached to people with epilepsy. It is an 'invisible' disability and as we all know 'not all disabilities are visible'. You've all seen the signs telling you that (in buses/trains/toilets etc).

However unlike other problems, it does rear it its ugly head very visibly if someone with epilepsy has a seizure. Not always flaking and shaking on the floor, as many people tend to expect, but also stopping mid-sentence and daydreaming. Or shouting a word. Or walking around looking for something that doesn't exist. Or twisting around in their chair as if they're dancing.

Epilepsy can be one hell of a visible invisible problem!

I have to tell you something - I don't drive

We live in a completely car-centric society and sometimes I don't know what's more of a challenge: telling people I have a form of epilepsy - or breaking the horribly unusual news to them that I don't drive- and at my age!
I met a couple of women at the weekend and arranged to see them this week - and then the awkward happened. (Bear in mind that epilepsy is a hidden condition and they had absolutely no idea that I had it.)
Woman Number 1 gave me driving instructions to her house.

Me: "I don't drive. Are you near a train station or on a bus route?"

WN1: "You don't drive???"

Me: "No, but I'll get to you by public transport."

WN1: "How?"

Me:" I don't exactly know yet but if you're not near a train station I can look up bus routes."

Woman Number 1 looked at Woman Number 2 with a 'that's odd, what-have-we-got-here' expression.

WN2 said: "How did you get here?"

Me: "Walked."

WNs1&2: "Walked!"

I was beginning to find this amusing, but also a bit difficult.

Me: "Yes, walked."

They thought about that for a minute...legs as a form of transport. Then -

WN2: "If you don't drive, how do you do your food shopping. I couldn't carry mine."

Me: "Online. It gets delivered."

WN2: "I prefer to do it myself - you can never be sure what you get."

Me: "Yes, I'd prefer to do it myself too but I don't drive so I have to work around it."

Now they have me cornered. Either I let them believe that I choose not to drive because I'm lazy and haven't bothered to learn or I'm banned because of an offence. I could make up a story about being kind to the environment but I'm not going to lie to help them out with their prejudice. So I tell them that the DVLA wouldn't give me a licence because I have a condition where I have a type of seizure - sometimes.

This somehow satisfies the two women. WN1 tells me the numbers of buses that go near her home and WN2 offers not only a lift home but also invites me to join her on a her next weekly shop.

I think the car thing is quite funny. People will spend hours bemoaning their weight (too much); diet (when they're going to start one). Then they jump in their car to drive a few yards down the road to buy a bunch of something they shouldn't be eating.

People ask me if my medication helps keep my weight off. I don't think so. It's not because we pop pills that the 'epileptic community' tend to stay fairly trim. It could be down to the fact that they're used to walking everywhere. Walking isn't a big deal or a huge exercise programme: it's a way of life.

(I still have seizures but those that haven't had one for a year - with or without medication - can reapply for their licence. Charities like Epilepsy Society have all the details)

Are we going to your place? No, it wasn't a proposition!

It sounded like a proposition, I grant you, although it definitely wasn't and the man who thought he was being propositioned reacted loudly - and dramatically - to assure everyone else (who might have overheard) he was having nothing to do with it.

Let me explain. I'd travelled over from Windsor to Twickenham to see a copywriting client and so was dressed for a business meeting (decent dress, good jacket - that's significant.) Had popped in to see a friend and during our chat had noticed a few 'whizzies' flying around my head but hadn't mentioned it to her and she hadn't noticed anything different in my demeanour.

I arrived back at Twickenham railway station to catch the 16.22 to Windsor & Eton Riverside but as the train pulled in, the seizure - that I now realise I'd been warned about as I was talking to Marilyn - finally happened: but not as most people know it!

I was sitting down and turned to the man next to me, who I suddenly thought was my other half and asked if we were getting the train to Windsor. He said he wasn't getting that train because he was going to ********* (I don't remember the name of the place) and I asked if I should go with him.

He shouted that he'd never seen me before in my life and jumped up as if to move away from someone who seemed seriously diseased. The shock somehow brought me out of my daze and I managed to tell him I'd had an epileptic seizure. To be fair to him, I remember him asking if I needed medical help and I said I didn't.

He scarpered, the train pulled out and I was left sitting on the platform bench for 30 minutes in total silence. Nobody who witnessed the event asked if I needed anything - even if it was just to make sure I knew the time of the next train since confusion was my only 'crime'. I looked a well-dressed businesswoman, not a hooker and there wasn't the slightest smell of alcohol on my breath. Nobody had any excuse for not trying to help but people aren't good with 'odd' and matters of the mind.

The reality is, if I'd tripped and made a mess of my leg I would have been inundated with offers of help. People are good with plasters!

Are we ever going to make any real progress - or are the myths here to stay?

The bottom line is: there are many of types of epilepsy - and not just the type you're probably thinking of as soon as you hear the word 'epilepsy '.

I met up with some people for coffee who'd become friends during the 12 weeks we'd spent on a business course. When they asked how I enjoyed my New Year I explained it had been a funny one because I'd spent a few weeks in hospital - not an emergency but a medication change. I have a form of epilepsy and I've been on one of my anti-epileptic drugs for so long, doctors decided I'd be better off starting the medication change with supervision (i.e. in hospital).

The group didn't seem hear anything after I'd said the word 'epilepsy'. Two of the women immediately looked at the floor to make sure there was enough room for me to fall on it.

"I don't have that type of epilepsy," I sighed.

"Is there another type?" someone asked.

"There are loads. About 50, I think. And since you haven't seen me have a seizure in the 12 weeks we worked together I'm probably not going to have one now, am I."

"What do you do when you have one?"

"I'll probably go blank for a little bit - won't respond to you - which might seem a bit rude and I might put my head on your shoulder but within a few minutes I'll be fine."

"Should we call an ambulance?"

"Absolutely not. There's nothing they can do and I'll be fine - more than fine by the time they arrive."

"When did your epilepsy start?"

"When I was 15 and I didn't realise it was such a big deal then. I'm 56 now and I only know it's a big deal now because of reactions like yours. It's not your fault. It's just that society doesn't seem to have moved on, if you know what I mean. If you're not in the epilepsy 'business' it's a bit of a closed shop! We seem to be fine talking about almost any other medical condition, except epilepsy."

One of the guys asked: "What do other people with epilepsy do - cos you said there were 50 types of fit?"

"Some shout, some wander, jerk, jabber, stammer, there's a whole range of stuff.

"Funnily enough, the picture most people have in in their heads when they hear the word 'epilepsy' is not the most common seizure overall. However it's the one everyone seems to know. I think it's because television and theatre can dramatise epilepsy without having to explain what it is by using the shaking seizure type. But it means that that particular myth perpetuates and the stigma lives on."

The table fell quiet for a bit while they took in the new info - particularly about me.

There's something you should know...I don't drive

We live in a completely car-centric society and I don't know what's more difficult: telling people I have a form of epilepsy - or instead, breaking the alien, freakish, horribly unusual news to them that I don't drive...
Met a couple of women at the weekend and arranged to see them this week - and then the horrible happened. (Bear in mind that ep is a hidden condition and they have absolutely no idea that I have it.)
Woman Number 1 gives me driving instructions to her house.
Me: "I don't drive. Are you near a train station or on a bus route?"
WN1: "You don't drive?"
Me: "No, but I'll get to you by public transport."
WN1: "How?"
Me:" I don't exactly know yet but if you're not near a train station I can look up bus routes."
Woman Number 1 looked at Woman Number 2 with a 'that's odd, what-have-we-got-here expression'.
WN2 said: "How did you get here?"
Me: "Walked."
WNs1&2: "Walked!"
I was beginning to find this amusing but also a bit awkward.
Me: "Yes, walked."
They thought about that for a minute...legs as a form of transport. Then -
WN2: "If you don't drive, how do you do your food shopping. I couldn't carry mine."
Me: "Online. It gets delivered."
WN2: "I prefer to do it myself - you can never be sure what you get."
Me: "Yes, I'd prefer to do it myself too but I don't drive so I have to work around it."
Now they have me cornered. Either I let them believe that I choose not to drive because I'm lazy and haven't bothered to learn or I'm banned because of an offence. I could make up a story about being kind to the environment but I'm not going to lie to help them out with their prejudice. So I tell them that the DVLA wouldn't give me a licence because I have a condition where I have a type of seizure - sometimes.
This somehow satisfies the two women. WN1 tells me the numbers of buses that go near her home and WN2 offers, not only a lift home, but also invites me to join her on a her next weekly shop!
I think the car thing is quite funny. People will spend hours bemoaning their weight (too much); diet (when they're going to start one); the gym (when they're going to go now they've bought membership). Then they jump in their car to drive a few yards down the road to buy a bunch of something they shouldn't be eating.
People ask me if my medication helps keep my weight off. Now I think about it, I don't know any fat people with epilepsy. That maybe a gross (pun intended) generalisation. It's not because we pop pills though. It's because, to us, walking isn't a huge exercise programme: it's a way of life! And I don't think we deserve medals for it. We were already born with our reward - feet - it's just that car-drivers rarely use theirs.

No - not THAT kind of epilepsy...

I could see the optician look worried when I told her my last seizure had been only two days ago. So I thought I was reassuring her when I explained the one before had been a whole week before that. But actually I had just increased her concerns.
"Is that normal?" she asked.
Well it's not 'normal' to have seizures, is it, but if she meant - as I expected she did - was that the general frequency, the answer was 'yes'. Unfortunately I'm going through a bit of a bad phase and having seizures several times per week.
But then I saw her look at the floor! And I realised what was going through her head. I may have been talking to a woman of (albeit eye) medicine but when I said epilepsy she only had one picture in her mind.
"I won't fall on the floor."
"Oh?"
"Or convulse."
"Oh."
"In fact if I had a seizure while you examined my eyes, you might not even notice."
"Oooh."
"If you saw me doing something strange, it would be saying 'no' over and over, looking vacant for about 30 seconds and probably not remembering much about that when I 'came back in the room', as it were. I might want a glass of water and then we could carry on."
"Oh I see."
"There are many, many different types of seizures."
"Yes, of course."
I don't know why she said that as though she suddenly knew a lot about epilepsy. If she had known anything about it she would have asked me in the first instance what type of seizures I had. She didn't. She presumed I had the stereotypical seizure until I explained.
These sort of situations could make me cross. They don't.
People know very little about epilepsy because many people with epilepsy are discouraged from talking about it.
If the condition wasn't hard enough to live with, the public ignorance of it makes it all the harder!
I suppose I sometimes dare to hope that those more closely involved with the world of medicine may know a little more than others.
But in reality epilepsy remains a hidden condition, buried by a society which doesn't want to talk about it.