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Epilepsy Research UK
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How do you explain to people what epilepsy is?

Hello there,

I have only recently been diagnosed with epilepsy in Nov 2017, and I'm on medication to help (it's not). As a 26 yr old I'm finding it really difficult to adjust as it is, but my main issue is trying to explain to someone what it is. People seem to think you just convulse on the floor and then you're right as rain, but its hard explaining to people that it affects my everyday life, not just when I have episodes.

Short of a sarcastic comment which I have found isn't helpful, I'd like to know how you guys explain it.

Thank you,

Lou :)

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When I explained to my children what my epilepsy was I said imagine you stood on a water hose that is full of water , what happens? The water stops and builds up , well that’s the same for me when I am leading up to have a fit I get less and less oxygen which makes mums arms jump and get dizzy sometimes forgetful. Then I asked them what happens if you take your foot off the hose loads of water comes rushing out of it well then that’s the same for mum I get a rush of oxygen I then can’t do anything hold anything I just fall when I wake up my head hurts I need to sleep some more and rest, life has to stop until my body has had time to recover from fighting with it’s self . Because that’s what it is doing fighting to survive all the pressure

Lj

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That is a lovely way to describe a seizure to your children, in a way they would understand.

Wish I had thought of that.

X SJ

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Thank you so much, I love this response!

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When I spoke to some teenagers about it in the '90s, I stressed to them not to stereotype epileptics. I said "You are all well aware of how a cold can take on various types. Well, epilepsy is just the same."

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It's very individual so that is a very hard question. For me it's as if someone has put a finger on the 'pause' button on the world, and life has gone on without me realising it. Also, someone with a sense of evil humour has wiped my mind of names and particular events. I wake up suddenly and continue life as if nothing has happened, gradually names, events come back, and I am left feeling more and more tired. Some people have a sense of warning beforehand....this can be anything from irritation to a sense of euphoria to a sense of being in command...and this may come 24 hrs before the seizure (grand mal). This can leave me in a state of anxiety and fear which I am currently trying to combat-through exercise, through writing, through music...anything which will put me in remission.

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I've been an epi for about 20 years. I'm being serious here. I just say that it's the same as when a computer crashes and you have to hit the Ctrl+Alt+Delete keys or even switch the computer off & take the battery out if you can to reset it. Sometimes it takes a few minutes but sometimes it takes a bit longer and you might need some help to fix it. As for the medication, that's just the anti-virus software which might need to be updated. Most people tend to get it when I use this analogy.

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