A hidden disability - with a twist!

When I was a junior reporter on a local newspaper (years ago - it was my first job), the sports correspondent said: "You don't look like someone who has epilepsy."

What???

I never got to the bottom of how he thought people with epilepsy should look. Perhaps with people in front of them ringing bells and shouting UNCLEAN?

Of course I asked and stared at him but he just blushed deeper and deeper until our news editor sort of pulled me off him and changed the subject. As I say, that was years ago - getting on for 40 - but public attitudes to epilepsy haven't changed much.

There is no physical 'look' attached to people with epilepsy. It is an 'invisible' disability and as we all know 'not all disabilities are visible'. You've all seen the signs telling you that (in buses/trains/toilets etc).

However unlike other problems, it does rear it its ugly head very visibly if someone with epilepsy has a seizure. Not always flaking and shaking on the floor, as many people tend to expect, but also stopping mid-sentence and daydreaming. Or shouting a word. Or walking around looking for something that doesn't exist. Or twisting around in their chair as if they're dancing.

Epilepsy can be one hell of a visible invisible problem!

What on earth's wrong?

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!”

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!