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.

It's stolen my memories - even really special moments

When people say "Do you remember..." I usually say "Yes" and often that won't be full truth.

I've learnt that it's insulting to them and sounds uncaring if I admit that actually I don't exactly remember their party/favourite aunt/exam success or whatever and I just can't get them to understand why I forget. The reality is that many people with epilepsy, in any of its forms, can suffer with embarassingly poor memory recall.

Usually I let the conversation carry on and hope upon hope that some detail will provide the clue that I need to remind me of the occasion/person. Sometimes it does, sometimes...the memory just isn't going to come back.

My friend, Claire, explains it like this: Imagine our mind as a giant picture puzzle; every time we have a seizure, the jigsaw breaks up and falls to the ground; when we come round, the puzzle rebuilds - but one piece is missing.
The more seizures we have, the more pieces are left out of the picture and we can't choose which pieces they'll be - or, if you like, which memories they represent.

Special memories

I remember bizarrely useless stuff in detail, like watching my mother roll out pastry in our kitchen when I was a child. I didn't have epilepsy then so I suppose my memory bank was safe. By the time I had children of my own, my epilepsy had well and truly taken hold for more than 15 years.

It was really, really, really lucky that when my son and daughter [left] were little, I adored taking pictures - particularly of them. I had no idea that there would come a time (now) when I'd rely on those pictures (nicely catalogued, I must say - also a bonus) to be my memory store and help me relive very special moments.

 See? I know how sad and uncaring that sounds. A mother who doesn't remember... Believe me, I'd rather remember than have to look at photographs - and yet there's plenty of stuff I do remember. My system of recall is no system at all! It's as chaotic as the tornardoes that happen in my head.

I'm certainly not talking about selective memory because that phrase, in itself, would suggest I can choose what to remember - which I can't.

Funnily enough, memory has never been a problem with work because at work we're expected to keep organised with lists, schedules and notes.

It would have been excellent if I had been warned, right from the outset, that the same kind of organisation was going to be necessary in my personal life. Doctors I've seen have only wanted to talk about drugs or surgery - never about managing life which, with uncontrolled ep, I'd suggest was key - wouldn't you?

I've explained to friends that my memory struggles but because I have 'behavioural' seizures and not convulsions which are more dramatic to witness, I think my epilepsy is generally perceived as 'not that bad'. All I'd say is: side-effects don't discriminate.

And that's all I needed to say about memory - as far as I remember....

Employers: it's not a fair tick-the-box question!

When you apply for a job, standard forms ask a range of personal history question including 'Do you have epilepsy?'
Someone like me would be lying if I didn't tick the box, indicating I had epilepsy but that, frankly, would tell the potential employer very little. Because:

• Yes. Neurologists would diagnose my condition as epilepsy.
• I don't and have never convulsed (in other words, fit the stereotype.)
• I never need an ambulance or medical attention after a seizure.
• I'll be 'back in the room', as it were, within a few minutes.
• My epilepsy doesn't affect my productivity.
• 500,000 people turn up for work every day with a hangover.
• Their hangovers significantly reduce their productivity.
• 600,000 people have a form of epilepsy.
• People with epilepsy know their limitations & will explain if you them a chance.
• People who arrive at the workplace with hangovers are less likely to.
• There are about 50 different types of seizures ranging from blinking to blacking out. Isn't the type of seizure more important information than the umbrella name for the medical condition?

I was talking about this with a friend of mine yesterday who's highly frustrated by forms that he wants to accurately complete. But they don't give him a chance to to give detail about his epilepsy which he knows is a much misunderstood medical condition. The friend in question doesn't convulse - and that goes for nearly half of all people with epilepsy.
However most people think convulsions are what epilepsy is all about. 
When my friend ticks the epilepsy box he's pretty sure that the potential employers examining his application will look at that piece of 'information' and move it (at best) to the bottom of the pile or (at worst) discard it completely. It just doesn't seem fair. He's intelligent, hardworking and a man with great integrity.
What about the Disability Discrimination Act, you might be thinking? Yes. What about it! No potential employer is stupid enough to ignore it and actually admit that epilepsy is why they don't want you on their staff. They'll find a reason that will be totally unconnected.
As said friend was saying...it almost makes you want to skip that box and just pretend or lie. Reality is, it's better to sit in front of someone and explain what happens to you specifically rather than tick a box which perpetrates an age-old myth.
I've no idea how employers imagine they could use the data they gather from the epilepsy box. 'Do you have epilepsy?' is the beginning of a conversation and in no way is a tick-the-box question.
Let's replace it with 'If you have a form of epilepsy, what form do your seizures take and how are you affected by them?'