EPILEPSY: Epilepsy, Language and Political Correctness

Everyone seems to know the rules when it comes to other forms of disability but what could cause offence to an epileptic?

Well, for a start calling someone an epileptic is not the done thing anymore – that’s sufferer of epilepsy to you.  But I don’t blame you if you didn’t know, I didn’t until researching this post.  But I don’t think it is offensive in the same way that calling (for instance) someone a cripple could be.  And generally speaking I don’t think epilepsy has such a clear cut equivalent.

My epilepsy sometimes worries people when I mention I have it.  Because it is not something that people know a great deal about it tends to put people outside of their comfort zone.  Sometimes I see panic creep into someone’s face if it comes up in conversation and they realise they don’t know what to say about it.  Quite often the urban myths and misinformation that are more famous than facts rush to the surface, and common comments tend to be of the “Ah, so you have to be careful around flashing lights then do you?” variety.  But there aren’t many words that someone would say in conversation that would have me intervening to say “Excuse me, I suffer from epilepsy and find that offensive.” 

Brainstorm - Bad?

Thought-shower - Good?

The closest there is to an offensive word connected with epilepsy in common usage is ‘brainstorm’.  Brainstorm originally meant – according to Wikipedia – “a state of temporary insanity”, which is presumably why it is deemed offensive.  Offensive, that is, if it’s used to describe a seizure.  But I have never heard this usage before, and I suspect most people haven’t.  It was, apparently, quite common in the 19th century, but hasn’t been in this context for a very long time.  Brainstorm now ‘means’ throwing ideas around and I’m willing to bet most people aren’t aware of this other usage.  Sporadically, overcautious but well-meaning organisations will suggest replacing the term brainstorm with ‘thought-shower’ in their meetings.  I am all for political correctness - I really am, I think on the whole political correctness is an attempt to make sure language is inclusive.  But trying to replace ‘brainstorm’ as a term is just tilting at windmills.  It’s also overwhelmingly considered non-offensive by people with epilepsy in studies.  In fact it causes offensive in its own way because it suggests that epileptics (or, sufferers of epilepsy) have skins as thick as a sheet of paper. 

This leads into a larger issue – people are less likely to be offended by specific words than they are by the way that they are spoken to or treated.  As someone memorably tweeted me, “I don't get annoyed by jokes and such. What irks me are those that think I've the IQ of a turnip because I'm epileptic.”  Exactly.  Words and jokes without any malicious intent are absolutely fine by me – something much more likely to really annoy or upset is, for instance, someone talking about me as if I’m not there when I’m coming round from a seizure.  There isn’t really that much in terms of language which is specifically and of itself offensive to people with epilepsy, the thing that will cause offense is ignorance and and ignorant behaviour, which is not unique to epilepsy or even to any disability but which is something that anyone in any minority group has to deal with at some point in their lives.  Actions speak louder than words, and I’d rather be treated respectfully and sympathetically and hear myself described as ‘being epileptic’ or ‘having a brainstorm’ than be spoken down to or ignored.

Oddly in a way, the terms which have been deemed as being most potentially offensive regarding epilepsy are the names given to seizures within the medical community until relatively recently – Grand Mal and Petit Mal.  These terms translate roughly from French as ‘Great Evil’ and ‘Small Evil’ which is certainly outdated and unsophisticated.  Grand Mal seizure were how seizures involving convulsions were described, and Petit Mal referred to seizures where people ‘zone out’ etc.  But it strikes me that these terms were phased out more because they were completely inadequate to keep up with the advances in epilepsy research over the last 50 years or so.  Over 20 different types of seizure have been identified to date, some relatively common and some much more obscure, but clearly an upgrade in language would have been necessary regardless of any potential inappropriateness of meanings. 

Of course, my cultural perspective is as someone living in a Western, first world country.  In some countries, the idea of epilepsy being to do with the literal seizure of someone’s mind by demons persists. I suppose in such cultures the descriptions of the condition as involving Great Evils or Small Evils might seem a sophisticated way of describing it, as in some countries there is no word for it.  The UK generally speaking might be ill-informed when it comes to epilepsy, but it is also aware of it as a mental health condition and not a spiritual malady.  Which is definitely a good start.

To end, a Medieval description of epilepsy before the word epilepsy was coined was ‘The Falling Sickness’.  I rather like the idea of having ‘The Falling Sickness’ – it sounds quite quaint and makes it sound as if my main problem is tripping over my feet all the time, like a cross between having a neurological disorder and being Norman Wisdom…

With thanks to @themockedturtle for their tweet.  For more information about epilepsy, please visit the Epilepsy Society and Epilepsy Action websites.

EPILEPSY: Clocking On

Don't Say Brainstorm - An occasional chat about Epilepsy...

This week it’s been National Epilepsy Week, a time to try and raise awareness about the very common and equally misunderstood condition I and millions of other people have.

It is a condition that can cause worry to people when you tell them you have it, because not everyone is fully aware of what it means.  Sometimes saying “I’m epileptic” results in a politely sympathetic, rictus smile trying to hide eyes that are way out of their depth.  Sometimes it provokes lots of curious questions.  Luckily, for people who don’t like being put on the spot, saying “I’m epileptic” is something you’re not likely to have to say.

The workplace is one place where you are going to have to say it at some point, however, and it’s probably the most awkward context.  Workplaces can be where people might feel more exposed to criticism or judgement than they would in social or familial ones.  But however well controlled your epilepsy is you have to let your employees know about it.  Apart from anything else, it means that if you have a fit at work people will know what to do; but from a less selfish perspective, it’s a really shocking thing to see happening and it’s unfair to leave people unprepared for it.

I always worried about mentioning it up in interviews.  I remember bringing it up once or twice in some of my first interviews when they asked if I had anything else I wanted to discuss, which made for some awkwardness at the time and then left me wondering later on if that had cost me the job.  It shouldn't feel awkward, because professional people shouldn't be prejudiced against medical conditions; but there are some employers out there who, given the choice between a sufferer and a non-sufferer, would choose the non-sufferer any time.  

I’ve worked for more managers who have been absolutely lovely about the whole epilepsy thing, but there are some ill-educated bastards out there so in interviews you have to be canny about it to give yourself a chance.  It is not right and it is not fair.  In a perfect world you should be able to say “I’m epileptic” outright and not have to worry about it costing you anything.  But it’s not a perfect world.  It bothered me for a while until I asked a consultant about it, who recommended letting prospective employers know the moment after a job offer has been made.  It’s blindingly obvious in hindsight – you’ve been assessed on your own merits, and judged worthy enough.  If they rescind the offer, they can only do so if the epilepsy would affect your ability to work or it’s discrimination.  It feels a bit devious to someone like me because my instinct is to be open about everything.  But I’ve found it a good rule to follow, and it means that if you don’t get offered a job it was because you failed on your own merits and not because of some condition you happen to have.

So once the interview’s done and you’ve got the job, then you have to tell everyone else and see what their reactions will be (I always think of this for some reason).  Where I work at the moment, I am supported extremely well, to the extent that they want to learn more about the condition to deal with it as best as they can.  I’m really grateful for that, because I have worked for some idiots in my time. I remember one manager from one of the Big 4 supermarkets say to me my epilepsy was “becoming more trouble than it’s worth”.  While I was coming round from a seizure on his shop floor, no less.  I believe he really thought that part of it was a ‘put on’ by me – that it was something I could control if I really, really tried hard and in the meantime was using as a convenient excuse to go home early.  In a different place, an office where I was temping, I had a seizure and almost everyone was really nice about it.  The one person who handled it badly was, again, the manager – he helped me up and out of the office to get me home but kept saying again and again and again “but we won’t be a able to pay you for this afternoon because you’re a temp you see, so you only get paid for the hours that you do, so we can’t pay you for this (etc).”  I wonder if epilepsy disturbs a certain kind of manager because they see it as something they have no control over happening in their office.  I felt sorry for the guy in the second example, because he was just a bit clueless and in a bit of a flap.  He was well-meaning.  The guy in the first example on the other hand was cold bastard.  

Those incidents happened a long time ago though, and there’s much more acceptance of disabilities in the workplace in general now.  I work for a company at the moment that have been terrific about the epilepsy – they want to learn more about the condition to make sure they are doing everything they can, and that’s wonderful.  I think epilepsy will take longer than certain other disabilities to be ‘normalised’ and accepted in a fuller way because of a lack of education about it, but things are generally changing for the better.  Awareness is continually being raised.

And a very happy National Epilepsy Week to all you at home!


Find out more about epilepsy (and Epilepsy Week!) at The Epilepsy Society and Epilepsy Action websites.  And please comment to let me and others know about your experiences with epilepsy.

EPILEPSY: Keep Taking The Tablets

Don't Say Brainstorm - An occasional chat about Epilepsy...

"What's so unpleasant about being drunk?" "You ask a glass of water..." - The Hitchhiker's Guide To The Galaxy

I’ve recently had a change in medication again, and it’s not the smoothest transition.

It has the effect of making me exhausted.  Absolutely shattered.  The dreams I have are more surreal than they used to be but seem much more real.  It’s just a matter of time, waiting for the body to adjust to this new medication, and things will get back to normal – but just waiting for normal service to be resumed can seem like hard work in itself.  First world problem I know – a self-indulgent complaint from the well fed with free access to drugs – but apparently I seem slightly drunk because I’m running a bit slower than usual, and seeming drunk at 9am is bad for my reputation.  I suppose you could say it's like being drunk with all the fun taken out of it.

Of course I’m not really complaining – well, maybe just a bit, but the bottom line is always going to be that if something is going to reduce my chances of having fits then I’m all for it.  Daily medication is a fact of life for many people in the world, millions of epilepsy sufferers and many more millions who have other illnesses.  I am sure that the vast majority of people would say that the good that their drugs do far outweighs the bad.

Medication has been a presence for every day of my adult life, and a few days of my adolescence for good measure.  Has it changed me?  How would I know?  Put very simplistically, the medications I have been on slow down or dull the brain to reduce the chances of seizures.  So is the version of me I have lived with for half of my life a slowed down and dulled version of some other possible me?  If I didn’t have to take these drugs would I be quicker on the uptake, wittier, more creative and ambitious?  (How could I be wittier?) And would I like this alternative, drug-free me more or less?  I don’t mean to suggest I would be completely different; however, if I hadn’t been on medication for the last 15 years I would be at the very least a slightly different person because I would have had an entirely different experience of life.

Being on medication means taking responsibility for your own condition – making sure you have enough drugs stocked up, enough with you when going away somewhere and remembering to take them.  This is true whether you are well equipped for such responsibility or not.  As an irresponsible young male, I think I did relatively well at organising this side of my life.  There have been very few occasions when I forgot to take my pills, and those times that I did taught me the hard way to have a better memory.  In a way it provided, and still provides, a form of structure, a ritual that bookends the day. 

There are so many different types of pills to be on for epilepsy. 

There are over 20 types of drugs for epilepsy.
Incidentally, my table is littered with blister packs such as these...

Sodium Valproate is one of the most common, and the first type that I was on.  It was moderately successful, in that the seizures were drastically reduced; but the aim is to cut out fits entirely, and I have had at least one fit every year that I have been diagnosed.  After moving to a combination of Lamotrigine and Levitiracetam 5 years ago the fits reduced further, but after a spate of seizures last Christmas a third drug, Carbmazepine, has been added – which is where you came in.  These tweaks in medication are always discussed with the consultants I have seen, and my attitude has generally been ‘why not?’  Despite my griping about the initial effects of this new drug I’m very pro-medication, and am thankful to live in a time when medicine exists at the level of sophistication it does now.  Having epilepsy in the middle-ages would have sucked.  At best you would get some Valerian root to chew on; at worst given up on as a lost cause, and left to convulse as and when you pleased.

There can be a stigma about medication.  Some people who are prescribed medication don’t want it, perhaps because they themselves see it as a stigma.  I have heard an account of someone who didn’t want to go to a doctor or get medication for their seizures because they thought they might lose their job.  The person in this account was a lorry driver.  This kind of thing is why I am pro-medication (and educating people about the condition).  Though sympathetic to that person’s situation that is undeniably irresponsible behaviour, putting the sufferer’s life and the lives of others at risk.  If people were more informed about epilepsy that individual might not have had to feel forced into neglecting his condition.  As it turned out the seizures in this case were mild, were controlled by medication, and the job was kept.

In the 21^st century the medication we have helps people with a condition like epilepsy live healthy and (relatively) normal lives.  Pharmaceutical drugs should be embraced.  For a short period of time I may not enjoy the fact my new medication has sapped some of my energy – but I know that in the long run it gives me a chance to have a life like other people, which is something that everyone should be entitled to.  Generally speaking, were I to avoid taking medication not only would I be failing to confront reality but I would be denying myself that basic right. 

Maybe if I hadn’t been on medication since this whole epilepsy thing started I would have been a different person (for better or worse); but either way I would have been a person that lived in fear of a treatable medical condition ruining everything – probably with strong justification.  Ultimately, I am a better person for feeling safe and independent, and feeling exhausted for a few days is a small price to pay for that.

For more information about epilepsy contact the Epilepsy Society and Epilepsy Action

EPILEPSY: How To Be An Epileptic

Don't Say Brainstorm - An occasional chat about epilepsy...

Is it really true that everyone is allowed one fit without having epilepsy?

I don't resent my epilepsy.  Obviously I don’t enjoy it, but the condition came early enough in my life so that it didn’t impede on an existing lifestyle.  Some peoples’ condition causes them to have more than one seizure a day, whereas I only have them a few days of the year.  It doesn’t make my life feel too much different to how it would be if I didn’t have epilepsy, and for that I am grateful.

No matter how serious the condition though, being diagnosed with epilepsy obviously has a massive impact on someone’s life.  Being epileptic stops you from doing a lot of things – obviously piloting aircraft and extreme sports are right out.  But even more everyday activities have to be approached with more care than usual – having a bath for instance, or going to the pub.  Alcohol reduces the effect of the medication I take and nowadays I even try to be sensible enough to actually bear that in mind.  Driving is probably the biggest thing that I miss, or rather the opportunity of learning how to drive.  After living in a village for two years I realised it was the lack of freedom that came with a lack of transport that annoyed me the most.
How does it happen then – at what point do you go from not having epilepsy to having it?  It obviously depends on the patient’s first experience with the NHS, and how that is dealt with; and sometimes that can be surprisingly blasé.  

I was diagnosed in my early teens, but it wasn’t after my first fit.  The first seizure I had was during the summer holidays when I was 14.  One moment I had been playing a game on the computer and found myself on the sofa.  My younger sister was the only other person in the house, and she managed to get the neighbour over the road to help.  She was obviously very worried – I’ve always said that for me the fits aren’t as bad for me as they are for the people around me.  I just have to wake up a bit confused, it’s everyone else that panics.  

I was taken to see a doctor that afternoon, and heard for the first time the piece of advice: “Everyone is allowed one fit without being epileptic”.  Anyone who has had a seizure is likely to have heard something similar.  I was told to go home and rest and so I did.  Doctors know their stuff, so we follow their advice.

Although I will never drive one of these I get to ride in them often enough

Except this advice – everyone having one fit without it being a cause for alarm – is questionable.  Hearing it makes you feel better if you’ve just had a fit for the first time, because it makes you worry less that you might have epilepsy.  But when you analyse it a bit more it is a silly thing to say.  If someone had a heart attack they wouldn’t be told that ‘everyone is allowed one heart attack without needing to be checked out for a heart condition’.  So why should someone who has just had a seizure be told that they needn’t worry about epilepsy, and don’t need to have it checked out further?  In many ways, it is the medical profession’s own hand-me-down advice to match the other urban myths about putting spoons in mouths and so on.  It is rooted in imperfect studies carried out in hospitals in the 1960s-70s, but it is not advice that is taught to medical professionals at university.  It is received wisdom.  It’s not written down anywhere and it isn’t part of anyone’s training. But it’s advice that’s given often.  Why?

There is a 50/50 chance that someone who has an unprovoked seizure will have another.  So sending someone home without treating it as something that should be at least followed up at a later date is not a good thing.  It is not neglectful, because that implies that the professionals aren’t doing something they’ve been taught to do.  Rather, it comes round again to a hazy understanding of seizures and epilepsy as we discussed last time we were on this subject.  If an unprovoked seizure has a high chance of being an indicator that another one could happen it should certainly be investigated.  I strongly believe this.  To pass it off as something that doesn’t need to be worried about is something you might expect a hopeful relative to do.  But the NHS needs to come up with a better strategy than this.  It needs to have a strategy full stop for dealing with people having their first seizure, instead of well-meaningly fobbing them off with comforting words based on nothing.

The gap between my first and second fits was about 9 months, and I don’t remember much about that one apart from being in A&E for 8 hours on a Saturday night in Nottingham.  You really see some things in A&E, and especially on a Saturday night in Nottingham.  To be diagnosed with epilepsy, all you need is to have had two unprovoked seizures – it doesn’t matter how long a time it’s been between them.  After the incident that Saturday I was sorted out with an appointment with a consultant and some scans, eventually leading to being an official card-carrying epileptic.  (Literally card-carrying – got a medical exemption certificate in my wallet and everything!)  

My fits have always been irregular and relatively infrequent.  But because I had friends and family around me when I had my fits I always had witnesses to confirm I was, indeed having convulsions.  But what if there hadn’t been any witnesses?  It could have been an awful lot longer.  That’s one of the reasons a lot of people don’t get diagnosed with epilepsy for some time – if someone is on their own and has seizures they may find themselves losing consciousness but won’t immediately think that they’ve had a fit.  Why would they?  If there’s no one around to tell them otherwise, why wouldn’t they just think they’ve fainted?  Another reason that if a seizure happens to be picked up on it should be investigated straightaway; who knows when the next opportunity could be to investigate it?

With many thanks to Professor Ley Sander. For more information, check out The Epilepsy Society website.

EPILEPSY: What Do You Know About Epilepsy?

Don't Say Brainstorm - An occasional chat about epilepsy...

Instead of reviewing some TV or something, I'm going to ask a question: What do you know about epilepsy? Do you think you could talk for more than two minutes on the subject comfortably, wihout running out of things to say?

If you don't think you could you'd probably be in good company. Epilepsy sometimes seems to be the least understood of the most common 'hidden' medical conditions. Whilst most people may not exactly be experts in conditions like diabetes and asthma, they somehow seem more comfortable with them as subjects. I think this is partly because something like diabetes is a physical condition, and the majority of people know what it feels like to have a physical illness, even if only for a few days. Mental conditions don't give non-sufferers as much scope to empathise, leading to more awkwardness and less innate comprehension.

I have been diagnosed with epilepsy since my early teens, and have been on medication for it ever since (if Prufrock measured out his life with coffee spoons, I have measured mine with foil blister packs). I have what used to be called 'grand mal' epilepsy, and is now somewhat catchily called 'Tonic Clonic'. I normally become unconscious and have convulsions, often hitting the floor/pavement quite hard - it's unlikely that there'll be no bangs unless I'm already lying down. Sometimes I don't become unconscious, which is nowhere near as much fun. But it never happened to me as often as it can for other people, for which I've always been grateful; and over the years my medication has gradually become fine-tuned enough to more or less control the seizures, so I have about an average of two a year.

I didn't know much about epilepsy and nor did my family when I had my first fit - I suspect the majority of people who develop epilepsy are ignorant of the facts of it until reality makes them learn quickly. Perhaps more surprisingly, at the age of 30 I still don't know very much about epilepsy. Some people want to learn as much of the science as they can about an illness to try and understand it. I've never had much of a scientific mind and neurology as a subject isn't something I find interesting (although I find reading about historical treatments of epilepsy fascinating).

And so I completely understand people who are at a bit of a loss for things to say when I mention the fact I'm epileptic. Because I would probably be at a bit of a loss in their shoes. The fact is, as a country, people don't know a lot about epilepsy in Great Britain, and most of what people think they do know about it is probably wrong.

For instance - most people with epilepsy will not have seizures brought on by strobe lights etc. Strobe lights and other similar effects can directly cause seizures amongst people who have photosensitive epilepsy, but photosensitive epilepsy only accounts for around 4% of epileptc diagnoses. But the idea that flashing lights cause epileptic fits has so firmly taken root in the popular consciousness it is hard to dispel. Similarly, the idea of someone swallowing their tongue during a fit is thought of as being a common danger, but is in fact incredibly unlikely.

But because of a lack of basic education about epilepsy these myths (and many others) abound, and that wouldn't be too much of a problem apart from the fact that it is these kind of myths that inform what people do in cases of emergency. So we have people even today who believe that if someone is having a fit you should immediately put a spoon in their mouth to stop them swallowing their tongue. I once worked with someone who genuinely believed that this was the correct thing to do, and was shocked when I told him that the last thing you should do is put your fingers near someone's mouth if they're having convulsions because there is a greater chance that they will bite clean through your finger than they will swallow their own tongue. It is also commonly believed that someone having a fit should be held down. This once happened to me in a Whetherspoon's in Inverness (yes, I've collapsed in some glamorous places alright), and all it did was exhaust a couple of burly Scotsmen and give me an extra few bruises.

But those men were well-meaning (as was my colleague who had picked up the 'spoon method' from somewhere); they were trying to help someone very obviously in trouble using the best information they had. It's just that they didn't have very good information because they've never been provided with anything better than hearsay and old wives' tales.  The first aid tips for what to do if someone's having a seizure are very simple and don't involve doing a great deal at all (and are printed here on The Epilepsy Society's website). People's natural instinct is that they should do something.  But usually there's nothing to do but wait for it to stop.

There really needs to be a lot more public education about epilepsy, because the lack of knowledge at the moment is dangerous. Thanks to Vinnie Jones a lot more people now know about CPR, but epilepsy education is still in the dark ages. And as I said earlier, my knowledge of epilepsy would be just as poor if it wasn't for the fact I was epileptic. It's just something that isn't really very well known about, and people are unlikely to go and find out about it unless they have a reason to. It's not a particularly rare form of illness - 1 in 4 people is or knows someone who is epileptic. And yet some cultures don't even have a word for it.

I don't really know all that much about it myself however, apart from the things I've picked up over the years of occasionally thrashing about. I feel like I should practice what I preach. And so although I might not be interested in neurology or the science behind epilepsy, I've decided to make it an early year's resolution to devote one blog a month to looking at its place in society, culture and the NHS. It's time for me to start looking at the subject head on instead of just putting up with it, because if you don't raise your own awareness of something, how can you raise anyone else's?



For more information on epilepsy try checking out the websites of The Epilepsy Society and Epilepsy Action