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'.
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!
