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.

Wow! What a difference a question makes...

This was the question that made all the difference: "What do you do when you have a seizure and what should I do?"
Blimey! I don't hear that very often - in fact, I'm not sure I've heard it before.
Hot on the heels of me blogging about the optician who assumed I fell and convulsed, without asking any questions (No, not THAT kind of epilepsy), came a meeting with physiotherapist Pauline at Kingston Hospital.
Pauline made no such assumptions - even though the fact I was there after breaking a wrist during a seizure might have slightly excused her. She asked me whether, in the event of me having a seizure, she should call an ambulance ('No, thank you') and whether I generally needed to go to hospital ('No, never - well unless I break a bone. Longterm use of medication has made me snap easily!! Osteopenia.')
According to Epilepsy Research, just over half of all epilepsy sufferers have the flake and shake (grand mal - although now we're supposed to call them tonic-clonic) seizures. Which means around half don't.
Why is that significant?
Because so many people, every day, are misunderstood when their behaviour doesn't fall into the neat little descriptive boxes that society has set out for them. So even if that behaviour is out-of-the-ordinary, it's understood if society accepts that 'people with epilepsy flake and shake' - and that's makes it utterly frustrating and unhelpful for the rest of us whose epilepsy doesn't comply!
Take note, people: we need more Paulines for a positive experience.