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.