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!

Life was rosy - then at 52 he developed epilepsy

Epilepsy is limiting. Many of us get the chance to get our heads round that, if you know what I mean, because our minds start misfiring early in life. But can you imagine if you've been happily motoring along life's journey and suddenly your brain flips a switch at the grand old age of 52. You have to give up your job, your driving licence and adapt your way of life  - because you get 'that thing called epilepsy'!

That happened to Ryan* when out-of-the-blue two years ago, aged 52, he developed a form of epilepsy. He was employed as a security guard and, with the best will in the world, people who have recurrent seizures can't hold onto that kind of job. Of course, he could no longer drive either and because in the UK we have to be seizure-free for one year before the DVLA reissues a licence, he's still not driving.

"I thought my life had come to an end!" he says. "Everything I knew was taken away from me."

That seems a bit dramatic to me (and I've told him so - but, then again, I was a teenager when I was diagnosed so have lived a pretty epi-ful life and had plenty of time to get used to it. Yep, in some ways I've had it easier by having it longer!)

He says: "I kept telling the professor he couldn't be right when he diagnosed 'epilepsy'. I told him I didn't fall on the floor and shake. I didn't believe him - and I didn't want to believe him. I thought my life would be over."

Ryan wanted answers - why had he suddenly developed epilepsy? There had been no accident so no head injury. There was no history of epilepsy in his family. It had descended without warning for seemingly no reason. But doctors had no answers for him. He had to accept that sometimes, it just happens. So what does Ryan (who now realises, by the way, that his life is not over) do when he has a seizure?

"Well, I need to sit, otherwise I lose my balance and sort of stagger around. I get a dreadful headache and tremble - although people can't always see that I'm trembling. Afterwards I feel very, very tired and I just want to sleep for maybe two or three hours."

Apparently some people might even think Ryan was drunk if they saw him during a seizure - and that's fine by him because even two years down the line, he's told very few people about the diagnosis. He would rather people make that assumption than 'come clean'!

It seems it's partly to do with cultural attitudes. Ryan comes from an area of Russia and although he and his sisters came to the UK when they were very young, it sounds like epi-troubles are very much hushed up in their corner of the world and Ryan's keeping true to the tradition. He hasn't told half his family or most of his friends in case they'll reject him. He's only let me tell this story by changing his name to protect his identity.

Shame...because the more of us who try to hide will only be helping to fuel society's fear of disability. Believe me, I understand the temptation. I just refuse to give into it.


*Name has been changed to protect identity.