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!

Epilepsy v hangover in the workplace

Epilepsy has had some bad press. And the media hasn't corrected myths, leaving people without epilepsy in the dark and people with epilepsy mainly hiding because the condition still carries such stigma.

I'm amazed that
most people without epilepsy still think there's only ONE type of epilepsy: the 'shaky' seizure.

It's maybe the most dramatic but by no means the only type of seizure. To give you an idea:

When Peter has a seizure, he stares and his leg goes cold. The whole episode is over in seconds.

Dave shouts, Julien wanders and Claire has walked out of a shop, passed security guards with a basket of unpaid goods. Rebecca jerks and Richard talks nonsense.

But for most of the time they all go about their business just as you do and you wouldn't guess anything is wrong. Epilepsy is the ultimate hidden illness.

Work
And those I've just mentioned work, just as many people with epilepsy do, but a recent survey discovered that a massive 75% of people with the condition preferred not to tell their employers about their epilepsy for fear of being 'judged'.

However, according to Drinkaware UK, 500,000 people go to work with a hangover every day and they have no problem talking (to their colleagues, at least) about that. There are 600,000 people with epilepsy in the UK, not all of them work and they won't all fit every day.

Simon whose epilepsy is well-controlled but exists nonetheless, said: "I'm on a freelance contract. I haven't had a day's absence and I haven't had a seizure at work but I have a fear that my employer will look at me differently if I talk about my epilepsy. The truth is, they stop listening to details as soon as they hear the work 'epilepsy'."

Claire looks at it differently although she's employed by the public sector and most people with epilepsy notice a marked difference between the attitudes of employers in the public and private sectors. She's a highly-skilled cartographer in a full-time job in the Civil Service and tries to educate other staff by giving talks on the subject.

Peter said: "If - and I mean if - I had a seizure at work, I'd be daydreaming for a few seconds and then I'd get on with my work. No problem and no productivity lost. The bloke next to me might come in wasted from a good night out the evening before. He'll be on half-power all day, productivity down by 50% but he'll have no trouble talking about what a good time he had and bragging about how much his head hurts - all day!"

'That can't be right'
There have been times when the person diagnosed with epilepsy simply doesn't recognise that their symptoms fit the understanding they've had of the word.

Take 52-year-old Ryan who found out late in life that he had a form of epilepsy - but wanted to argue about the diagnosis.

He said: "I kept telling the professor that he couldn't be right when he diagnosed 'epilepsy'. I told him I didn't fall on the floor and shake."

Ryan loses balance, trembles and suffers a horrible headache. Like many others with epilepsy, he has has been mistaken for being drunk and would prefer that people make that assumption than have to 'come clean' with them. Ryan comes from an area of Russia where, he says, cultural attitudes are harsh and for that reason he hasn't even told some of his family about his problem.

It is the easiest way of representing epilepsy on TV and in the theatre and I suppose that goes a long way to explaining why people know so much about it and little else about other types of epilepsy, of which there are many.

To bust a few more of those myths that are hanging on, the truth is that many of us do NOT:

• shake
• froth at the mouth
• bite our tongues
• want or need to go to hospital after a seizure
• have problems with flashing lights

And - to correct a very out-of-date myth:

• it's biologically impossible to swallow your tongue!

I have to laugh at my ep sometimes....

This story happened a while ago but it doesn't date. Date being the operative word! 
I hadn't long split from my husband and was seeing the new man in my life. It was about time, I figured, that I told him about the form of epilepsy I had - just in case. Better for him to be forewarned.
But what if he was shocked? What if he had the usual old prejudice? I hadn't known him that long and I wasn't sure how he'd react.
Anyway, why was I even thinking about it. It was hardly like I was going to have a seizure....was it?
All this was going through my head as I walked to the pub where he was waiting with a glass of wine for me. It was a beautiful summer's afternoon and we took our drinks out into the garden to sit near the river.
Nick started to say something - and I haven't a clue what because, apparently, I suddenly jumped up, started fiddling with my top, moved onto my trousers and then demanded to go home for coffee without taking so much as a sip of the wine. Nick, understandably, was a little surprised and persuaded me to settle for a much nearer cafe. I grabbed his hand and marched him there at some pace - my conscious mind knowing nothing of what I was doing!
But by the time my cappucino arrived I was 'back in the room' - realising that 'it' must have happened because I was in a different place, looking at a different drink. I know how odd that must sound to anybody who doesn't have epilepsy: 'how could she still walk and talk but actually be "out of it"!'
Honestly, it sounds odd to me when I hear the story. It's like it happened to someone else which is why, maybe, I've learnt to laugh at it!
And if I hadn't decided to tell Nick there and then, he wouldn't have realised the episode was epilepsy - or even suspect behaviour. He still maintains that he thought the clothes fiddling bit was me being attacked by a wasp/bee and the coffee demand was simply me deciding I didn't want alcohol.
Looking back, I think the seizure might have emerged out of the desperate hope that I wouldn't have one. Oh well! It taught me to lighten up and relax.

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?'