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!

Are we ever going to make any real progress - or are the myths here to stay?

The bottom line is: there are many of types of epilepsy - and not just the type you're probably thinking of as soon as you hear the word 'epilepsy '.

I met up with some people for coffee who'd become friends during the 12 weeks we'd spent on a business course. When they asked how I enjoyed my New Year I explained it had been a funny one because I'd spent a few weeks in hospital - not an emergency but a medication change. I have a form of epilepsy and I've been on one of my anti-epileptic drugs for so long, doctors decided I'd be better off starting the medication change with supervision (i.e. in hospital).

The group didn't seem hear anything after I'd said the word 'epilepsy'. Two of the women immediately looked at the floor to make sure there was enough room for me to fall on it.

"I don't have that type of epilepsy," I sighed.

"Is there another type?" someone asked.

"There are loads. About 50, I think. And since you haven't seen me have a seizure in the 12 weeks we worked together I'm probably not going to have one now, am I."

"What do you do when you have one?"

"I'll probably go blank for a little bit - won't respond to you - which might seem a bit rude and I might put my head on your shoulder but within a few minutes I'll be fine."

"Should we call an ambulance?"

"Absolutely not. There's nothing they can do and I'll be fine - more than fine by the time they arrive."

"When did your epilepsy start?"

"When I was 15 and I didn't realise it was such a big deal then. I'm 56 now and I only know it's a big deal now because of reactions like yours. It's not your fault. It's just that society doesn't seem to have moved on, if you know what I mean. If you're not in the epilepsy 'business' it's a bit of a closed shop! We seem to be fine talking about almost any other medical condition, except epilepsy."

One of the guys asked: "What do other people with epilepsy do - cos you said there were 50 types of fit?"

"Some shout, some wander, jerk, jabber, stammer, there's a whole range of stuff.

"Funnily enough, the picture most people have in in their heads when they hear the word 'epilepsy' is not the most common seizure overall. However it's the one everyone seems to know. I think it's because television and theatre can dramatise epilepsy without having to explain what it is by using the shaking seizure type. But it means that that particular myth perpetuates and the stigma lives on."

The table fell quiet for a bit while they took in the new info - particularly about me.

Wow! What a difference a question makes...

This was the question that made all the difference: "What do you do when you have a seizure and what should I do?"
Blimey! I don't hear that very often - in fact, I'm not sure I've heard it before.
Hot on the heels of me blogging about the optician who assumed I fell and convulsed, without asking any questions (No, not THAT kind of epilepsy), came a meeting with physiotherapist Pauline at Kingston Hospital.
Pauline made no such assumptions - even though the fact I was there after breaking a wrist during a seizure might have slightly excused her. She asked me whether, in the event of me having a seizure, she should call an ambulance ('No, thank you') and whether I generally needed to go to hospital ('No, never - well unless I break a bone. Longterm use of medication has made me snap easily!! Osteopenia.')
According to Epilepsy Research, just over half of all epilepsy sufferers have the flake and shake (grand mal - although now we're supposed to call them tonic-clonic) seizures. Which means around half don't.
Why is that significant?
Because so many people, every day, are misunderstood when their behaviour doesn't fall into the neat little descriptive boxes that society has set out for them. So even if that behaviour is out-of-the-ordinary, it's understood if society accepts that 'people with epilepsy flake and shake' - and that's makes it utterly frustrating and unhelpful for the rest of us whose epilepsy doesn't comply!
Take note, people: we need more Paulines for a positive experience.

That wasn't necessary, was it!

Was carted off to hospital yesterday by over-zealous paramedics. Yes, I had had an epileptic seizure in public. Yes, my speech probably did sound a bit slurry afterwards. Don't know. I was on my own so nobody who knew me could give 'evidence'.
The fact that, after the seizure, I paid for the goods that I had in my shopping basket with a card and had no problem remembering the PIN number - oh, and also remembered that I had a loyalty card and fished around for that because I didn't want to miss out on points - didn't convince the paramedics.
I told them, over and over, that there was no need for me to go to hospital and that would only achieve me being stranded in a place far from home.
So eventually...I ended up stranded in a place I didn't need to go to,  far from home.
The doctor I saw in A&E didn't even bother to examine me: just told me that the paramedics should have listened and advised me to get off as soon as I could rather than sit out the three-hour wait.
OK, epilepsy is so much more complex than, say, broken limbs - which paramedics are really, really good with.
So why don't they leave the problem, then, to the people who best know how to deal with it. (That'll be the people with the condition.) They finally persuaded me, by the way, by telling me I had dangerously low blood pressure. The doctor said I had blood pressure to envy!
I had told the paramedics I hadn't eaten much that day, was famished and had been about to go grab a bite to eat. I'll put it down to a lack of training that they think it's OK to decide to delay my next meal for hours by taking me to casualty.
Sometimes it may be necessary to take people to hospital after an epileptic seizure. That's never been the case with me. I'm not stupid. I've had the condition for 35 years. Some paramedics have, in my experience, understood loads - and when I've asked how they've become so knowledgable about epilepsy, they've said they've made it their own personal business to learn.
It was worrying when all three paramedics yesterday felt there was reason to be alarmed because I couldn't remember details of the seizure. Aren't they taught even that much? Mmmmm. There are 600,000 people with epilepsy in the UK....time for paramedic training to keep up!