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!

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.

Hello Hong Kong: may you continue to Enlighten all!

Really pleased to welcome on board, Enlighten - Action for epilepsy, a charity facing a hideous uphill struggle. Yes, I know all epilepsy charities have a hard time but listen to this....

Until relatively recently, the very word for epilepsy in Chinese (dean gan tsing) suggested craziness or madness cented on the character name 'dean'. Only in 2010 was the word changed to 'no gan tsing' disassociating the condition from the crazy character 'dean'.

Is it surprising then, with their society being so harsh that the 65,000 people in Hong Kong with epilepsy tend to squirrel themselves away, hiding their secret because they fear discrimination and social exclusion. Although...when Enlighten's communication officer contacted me, I wonder if she thought the UK was light years ahead. I don't think we're so very far ahead.

I think we've made a little more progress but - and here's the troubling bit - it seems to me mainly because lots of people in the UK now know what they're supposed to think or say about epilepsy. What many feel sadly hasn't changed much.

What has changed, is that there are many of us doing our own little bit to fight the discrimination and social exclusion that still exists - despite laws that are in place to prevent it. We're trying to enlighten people too.

I was talking to a young woman, 24, the other other day who said she found it hard to find work - even voluntary - and friends were few on the ground because her seizures (the full-performance tonic-clonic type) scared them off. That really hasn't been my experience but it's symptomatic of the fact, Hong Kong, that you aren't so far behind!

Another epi-friend pointed out that while most of us, in the UK, would imagine that there are no longer any issues facing members of other ethnic groups, members of other ethnic groups might tell the story differently.

While the subject of race has been heaved onto a public stage and debated at length, epilepsy which has been around as long, has stayed in the wings and has yet to make a real entrance anywhere in the world.

But we are definitely getting somewhere. It's people like those behind Enlighten that will make a difference to the lives of so many people who felt they had to hide away. Thank you for adding to the voice that's beginning to be heard.

Let's keep at it. Together we will get people out of the shadows and make sure that no society ever again dares to demonise the name of epilepsy.

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.

It's stolen my memories - even really special moments

When people say "Do you remember..." I usually say "Yes" and often that won't be full truth.

I've learnt that it's insulting to them and sounds uncaring if I admit that actually I don't exactly remember their party/favourite aunt/exam success or whatever and I just can't get them to understand why I forget. The reality is that many people with epilepsy, in any of its forms, can suffer with embarassingly poor memory recall.

Usually I let the conversation carry on and hope upon hope that some detail will provide the clue that I need to remind me of the occasion/person. Sometimes it does, sometimes...the memory just isn't going to come back.

My friend, Claire, explains it like this: Imagine our mind as a giant picture puzzle; every time we have a seizure, the jigsaw breaks up and falls to the ground; when we come round, the puzzle rebuilds - but one piece is missing.
The more seizures we have, the more pieces are left out of the picture and we can't choose which pieces they'll be - or, if you like, which memories they represent.

Special memories

I remember bizarrely useless stuff in detail, like watching my mother roll out pastry in our kitchen when I was a child. I didn't have epilepsy then so I suppose my memory bank was safe. By the time I had children of my own, my epilepsy had well and truly taken hold for more than 15 years.

It was really, really, really lucky that when my son and daughter [left] were little, I adored taking pictures - particularly of them. I had no idea that there would come a time (now) when I'd rely on those pictures (nicely catalogued, I must say - also a bonus) to be my memory store and help me relive very special moments.

 See? I know how sad and uncaring that sounds. A mother who doesn't remember... Believe me, I'd rather remember than have to look at photographs - and yet there's plenty of stuff I do remember. My system of recall is no system at all! It's as chaotic as the tornardoes that happen in my head.

I'm certainly not talking about selective memory because that phrase, in itself, would suggest I can choose what to remember - which I can't.

Funnily enough, memory has never been a problem with work because at work we're expected to keep organised with lists, schedules and notes.

It would have been excellent if I had been warned, right from the outset, that the same kind of organisation was going to be necessary in my personal life. Doctors I've seen have only wanted to talk about drugs or surgery - never about managing life which, with uncontrolled ep, I'd suggest was key - wouldn't you?

I've explained to friends that my memory struggles but because I have 'behavioural' seizures and not convulsions which are more dramatic to witness, I think my epilepsy is generally perceived as 'not that bad'. All I'd say is: side-effects don't discriminate.

And that's all I needed to say about memory - as far as I remember....

I have to laugh at my ep sometimes....

This story happened a while ago but it doesn't date. Date being the operative word! 
I hadn't long split from my husband and was seeing the new man in my life. It was about time, I figured, that I told him about the form of epilepsy I had - just in case. Better for him to be forewarned.
But what if he was shocked? What if he had the usual old prejudice? I hadn't known him that long and I wasn't sure how he'd react.
Anyway, why was I even thinking about it. It was hardly like I was going to have a seizure....was it?
All this was going through my head as I walked to the pub where he was waiting with a glass of wine for me. It was a beautiful summer's afternoon and we took our drinks out into the garden to sit near the river.
Nick started to say something - and I haven't a clue what because, apparently, I suddenly jumped up, started fiddling with my top, moved onto my trousers and then demanded to go home for coffee without taking so much as a sip of the wine. Nick, understandably, was a little surprised and persuaded me to settle for a much nearer cafe. I grabbed his hand and marched him there at some pace - my conscious mind knowing nothing of what I was doing!
But by the time my cappucino arrived I was 'back in the room' - realising that 'it' must have happened because I was in a different place, looking at a different drink. I know how odd that must sound to anybody who doesn't have epilepsy: 'how could she still walk and talk but actually be "out of it"!'
Honestly, it sounds odd to me when I hear the story. It's like it happened to someone else which is why, maybe, I've learnt to laugh at it!
And if I hadn't decided to tell Nick there and then, he wouldn't have realised the episode was epilepsy - or even suspect behaviour. He still maintains that he thought the clothes fiddling bit was me being attacked by a wasp/bee and the coffee demand was simply me deciding I didn't want alcohol.
Looking back, I think the seizure might have emerged out of the desperate hope that I wouldn't have one. Oh well! It taught me to lighten up and relax.

Employers: it's not a fair tick-the-box question!

When you apply for a job, standard forms ask a range of personal history question including 'Do you have epilepsy?'
Someone like me would be lying if I didn't tick the box, indicating I had epilepsy but that, frankly, would tell the potential employer very little. Because:

• Yes. Neurologists would diagnose my condition as epilepsy.
• I don't and have never convulsed (in other words, fit the stereotype.)
• I never need an ambulance or medical attention after a seizure.
• I'll be 'back in the room', as it were, within a few minutes.
• My epilepsy doesn't affect my productivity.
• 500,000 people turn up for work every day with a hangover.
• Their hangovers significantly reduce their productivity.
• 600,000 people have a form of epilepsy.
• People with epilepsy know their limitations & will explain if you them a chance.
• People who arrive at the workplace with hangovers are less likely to.
• There are about 50 different types of seizures ranging from blinking to blacking out. Isn't the type of seizure more important information than the umbrella name for the medical condition?

I was talking about this with a friend of mine yesterday who's highly frustrated by forms that he wants to accurately complete. But they don't give him a chance to to give detail about his epilepsy which he knows is a much misunderstood medical condition. The friend in question doesn't convulse - and that goes for nearly half of all people with epilepsy.
However most people think convulsions are what epilepsy is all about. 
When my friend ticks the epilepsy box he's pretty sure that the potential employers examining his application will look at that piece of 'information' and move it (at best) to the bottom of the pile or (at worst) discard it completely. It just doesn't seem fair. He's intelligent, hardworking and a man with great integrity.
What about the Disability Discrimination Act, you might be thinking? Yes. What about it! No potential employer is stupid enough to ignore it and actually admit that epilepsy is why they don't want you on their staff. They'll find a reason that will be totally unconnected.
As said friend was saying...it almost makes you want to skip that box and just pretend or lie. Reality is, it's better to sit in front of someone and explain what happens to you specifically rather than tick a box which perpetrates an age-old myth.
I've no idea how employers imagine they could use the data they gather from the epilepsy box. 'Do you have epilepsy?' is the beginning of a conversation and in no way is a tick-the-box question.
Let's replace it with 'If you have a form of epilepsy, what form do your seizures take and how are you affected by them?'

There's something you should know...I don't drive

We live in a completely car-centric society and I don't know what's more difficult: telling people I have a form of epilepsy - or instead, breaking the alien, freakish, horribly unusual news to them that I don't drive...
Met a couple of women at the weekend and arranged to see them this week - and then the horrible happened. (Bear in mind that ep is a hidden condition and they have absolutely no idea that I have it.)
Woman Number 1 gives me driving instructions to her house.
Me: "I don't drive. Are you near a train station or on a bus route?"
WN1: "You don't drive?"
Me: "No, but I'll get to you by public transport."
WN1: "How?"
Me:" I don't exactly know yet but if you're not near a train station I can look up bus routes."
Woman Number 1 looked at Woman Number 2 with a 'that's odd, what-have-we-got-here expression'.
WN2 said: "How did you get here?"
Me: "Walked."
WNs1&2: "Walked!"
I was beginning to find this amusing but also a bit awkward.
Me: "Yes, walked."
They thought about that for a minute...legs as a form of transport. Then -
WN2: "If you don't drive, how do you do your food shopping. I couldn't carry mine."
Me: "Online. It gets delivered."
WN2: "I prefer to do it myself - you can never be sure what you get."
Me: "Yes, I'd prefer to do it myself too but I don't drive so I have to work around it."
Now they have me cornered. Either I let them believe that I choose not to drive because I'm lazy and haven't bothered to learn or I'm banned because of an offence. I could make up a story about being kind to the environment but I'm not going to lie to help them out with their prejudice. So I tell them that the DVLA wouldn't give me a licence because I have a condition where I have a type of seizure - sometimes.
This somehow satisfies the two women. WN1 tells me the numbers of buses that go near her home and WN2 offers, not only a lift home, but also invites me to join her on a her next weekly shop!
I think the car thing is quite funny. People will spend hours bemoaning their weight (too much); diet (when they're going to start one); the gym (when they're going to go now they've bought membership). Then they jump in their car to drive a few yards down the road to buy a bunch of something they shouldn't be eating.
People ask me if my medication helps keep my weight off. Now I think about it, I don't know any fat people with epilepsy. That maybe a gross (pun intended) generalisation. It's not because we pop pills though. It's because, to us, walking isn't a huge exercise programme: it's a way of life! And I don't think we deserve medals for it. We were already born with our reward - feet - it's just that car-drivers rarely use theirs.

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.

No - not THAT kind of epilepsy...

I could see the optician look worried when I told her my last seizure had been only two days ago. So I thought I was reassuring her when I explained the one before had been a whole week before that. But actually I had just increased her concerns.
"Is that normal?" she asked.
Well it's not 'normal' to have seizures, is it, but if she meant - as I expected she did - was that the general frequency, the answer was 'yes'. Unfortunately I'm going through a bit of a bad phase and having seizures several times per week.
But then I saw her look at the floor! And I realised what was going through her head. I may have been talking to a woman of (albeit eye) medicine but when I said epilepsy she only had one picture in her mind.
"I won't fall on the floor."
"Oh?"
"Or convulse."
"Oh."
"In fact if I had a seizure while you examined my eyes, you might not even notice."
"Oooh."
"If you saw me doing something strange, it would be saying 'no' over and over, looking vacant for about 30 seconds and probably not remembering much about that when I 'came back in the room', as it were. I might want a glass of water and then we could carry on."
"Oh I see."
"There are many, many different types of seizures."
"Yes, of course."
I don't know why she said that as though she suddenly knew a lot about epilepsy. If she had known anything about it she would have asked me in the first instance what type of seizures I had. She didn't. She presumed I had the stereotypical seizure until I explained.
These sort of situations could make me cross. They don't.
People know very little about epilepsy because many people with epilepsy are discouraged from talking about it.
If the condition wasn't hard enough to live with, the public ignorance of it makes it all the harder!
I suppose I sometimes dare to hope that those more closely involved with the world of medicine may know a little more than others.
But in reality epilepsy remains a hidden condition, buried by a society which doesn't want to talk about it.

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.

You're never too young to talk about it

Someone once told me he dreaded the thought of his young nieces seeing him having a seizure because he felt they were too young to handle it. I could understand his worry. He was a single man, no children.
I, on the other hand, am a mother of two and Remi and Lily have grown up with epilepsy in their lives. They've seen me have seizures, helped me through them and are more relaxed talking about epilepsy than anyone else I know. When I say epilepsy's been part of their lives, Remi, the eldest, was only six weeks old when I dropped him during a seizure. That unhappy incident was the result of a naive mother who panicked during an aura, tried to put him back in the crib but never made it. He's going to be 22 this year, very healthy, thankfully no harm was done. When Lily came along I was better at the mother thing. (She seems to have a gift - seizure prevention talk - but I'll tell you about that another time.)
When they were very little,  my ex-husband explained what was happening when I had a seizure and very easily settled their minds on the matter. Children are so accepting of situations that if he'd said "Mummy turns into a super-hero every now and then" they probably would have accepted that too.
As it was, the explanation wasn't that interesting to them at the time so they didn't take much notice for a while. But they always cared - and cuddled. As they grew older they became more and more concerned, in an academic way, if you like, but stayed very calm and comfortable - as they still are.
Because they are so relaxed with the subject, so are their friends. There is something in the "if it's ok with them, it's got to be ok with us" affect. It's always been the case that if an episode has happened they've handled it with no drama, no fuss and life has carried on as normal. I just get the glass of water I need. Their friends have seen that - and I think that's excellent.
And then there are my friends' kids who have been really great. There was a funny moment when Linda's middle one was telling their new neighbour, in very matter-of-fact style, that I always say 'No' before I have a seizure. Seconds later I was offered something and as soon as I said 'No' the neighbour looked terrified! Little Saul couldn't understand the reaction.
Remi and Lily and their friends have no problem talking about epilepsy. I'm proud of them for many reasons and I'm certainly proud of them for that. And I thank them (and their friends) for helping to make me feel so supported in a society which really doesn't want to talk about epilepsy. I believe that educating young people - the earlier, the better - and finally starting some conversation is the way to go.

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!