Fit For Anything

You wouldn’t be able to diagnose the problem from what you see these people do – but it’s one of the best-known neurological medical disorders known

When it happens to Peter he stares and his leg goes cold. Dave shouts, Julien wanders and Claire has walked out of a shop, passed security guards, with a basket of unpaid food.

I haven't a clue what's wrong????

However on a good day – which is the majority of the time – they go about their business and you wouldn’t guess anything is wrong. Because they all have the ultimate hidden illness – epilepsy: but not as most people know it!

And, by the way, so do I. In my case I say ‘No’ repeatedly or maybe black out completely for about a minute. Ten minutes later I’m fine.

The irony is that these type of ‘behavioural seizures are more common that the stereotypical ‘flake and shake’ seizures that everyone seems to know about.

Yet the the word ‘epilepsy’ immediately conjures up a picture of someone on the floor convulsing, frothing at the mouth when the reality is that most people with epilepsy:

• ·      Don’t convulse or froth at the mouth
• ·      Nor are they affected by flashing lights
• ·      Nor can they possibly – in a zillion years – swallow their tongue

When epilepsy is illustrated on TV (Nancy Carter, EastEnders, for example) producers of course, choose the more theatrical tonic-clonic seizure because it saves a lot of script explanation. After all, it’s:

• ·      Not very dramatic to have an actor stare at a wall
• ·      If she shouts that’s going to get confused with another illness
• ·      If she passes out, it might look like she’s having a heart attack.

So the myth of there being just ONE type of epileptic seizure is perpetuated by TV and theatre, for starters.

Misinformation is never properly corrected and the stigma goes on. Nobody wants to properly speak about the subject. When you think about it, how many celebrities can you name that have talked about their troubles with epilepsy? There are 600,000 people in the UK with the problem so it’s bound to have hit someone in the limelight but they just don’t want to ‘come out’.

Work

Lots of people with epilepsy work but a recent survey discovered that 75% of them preferred not to tell their employers about their epilepsy for fear of being ‘judged’.

(According to Drinkaware, 500,000 people go to work with a hangover every day and they have no problem talking about that.)

Shaun, whose epilepsy is well-controlled 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 word ‘epilepsy’.”

Claire looks at it differently although, to be fair, she’s in a more secure employment position. She’s a highly-skilled cartographer in a full-time job with the Civil Service and tries to educate other staff by giving talks on the subject.

‘That can’t be right!’

There have been times when even 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 says: “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 the condition, he has been mistaken for being drunk – and would prefer that people make that assumption than explain what's actually happening. 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 newly-acquired problem.

Nevertheless, Western attitudes don’t seem to be very much more advanced if you look at that figure of 75% who don’t want to tell their employers.

“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,” said Peter. “The bloke next to me might come in wasted from a good night out the night 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 how much his head hurts!”