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!”