Sunday, 13 May 2012

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."
"Or convulse."
"In fact if I had a seizure while you examined my eyes, you might not even notice."
"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.


  1. It would good if H.R. depts of groups running opticians,chemists etc could run staff awareness schemes.

  2. This blog should expand exponentially

  3. Sorry to hear of your experience. Unfortunately it's the same with most mental illnesses. Because it can't be seen, people make assumptions or think they know all about it because of one case they've heard of. I have been with you when you've had fits, and even called an ambulance once, just to be certain. But spending time with you has taught me how to deal with your particular illness. Just be there to catch you if you're in danger of falling and be there to let you know what happened when you come round and ask you how it was for you. Keep you safe. What about the film you are in? Will that be shown on TV? Could really help educate people. Be great to have more awareness of the condition. Very brave of you to be in it... Much love.

    1. Thanks, Sabina. Don't know what's happening about the film - it's in the hands of the director/producer - but you're right: it would go a long way to raising awarenenss about the different types of epilepsy, how people handle their condition and how they'd like others to xx

  4. Great post and thanks for sharing, my friends son has a similar condition and he likes to cook. We were trying to explain how that works to some care assistants!

    1. Thank you. Yep, it's a constant battle trying to explain the constant battle going on in your head!
      It would be great if you could show the blog to your friend's son because he may be interested in some of the stories - and may want to join in himself.

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