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!

Going walkabout - that's a form of epilepsy too!

If I say 'epilepsy' you probably picture someone convulsing on the floor, maybe foaming at the mouth. That's the stereotype - perpetuated by the media, particularly TV because a dramatic flake and shake needs no narrative. For many of us, though, our seizures look nothing at all like that.
Take my friend, Claire. She's a highly-skilled cartographer, holds down a hugely important job and happens to have had epilepsy since she was very young. She makes me laugh when she tells me of one particular kind of seizure she's experienced: basically, wandering.
I'll let her explain...

Claire

"I'd just wander off for miles and miles - sleepwalking is close to what we mean but it's obviously not that. I'd miss huge pieces of time, walking around in a sort of parallel universe. Nobody recognised that as epilepsy and it caused the strangest situations in my life. When I came round, conscious enough to know that I was lost, I'd bluff my way back to where I'd come from. You know, pretend I was a tourist, ask someone for directions - pretend I was meeting somebody at the junction, or something.

"I stopped trying to explain I'd had an epileptic seizure after a few attempts where people just didn't believe me. It didn't fit with the idea they had about the condition.
"There was a time when I was at a conference at Gatwick and walked out, though security, all in a trance. I walked along the Gatwick to London road which is rural at the Gatwick end and when I came round, thought 'Where am I!'
"There were just cars whizzing by; no houses, no people to ask - just grass, well that doesn't help much does it! All I could do was walk one way or the other and I didn't even know which way I'd come from. If there'd been houses I would probably have acted the 'lost tourist' and knocked at a door but I had to walk to the next sign. I got to a junction that said London and remembered I hadn't been in London.
"Meanwhile back at the conference they'd realised I was missing and had phoned my late father, who I'd given as next-of-kin. He was dying of cancer at the time but was calm, telling them not to worry. I eventually made my way back just by walking in the right direction. I didn't know for what reason I was going there - just hoped it would become clear when I arrived."
The episode took a total of three hours out of Claire's life: missing moments which, added to her many other walkabouts, add up to a sizeable chunk of missing time from her life. That, in itself, is an odd concept. It's also a specific example of the 'other' type of seizures, post-epileptic automatism in this case, that are rarely talked about but make a colossal impact on people's lives.