But you look so normal …..
Yes, those wonderful words, again.
I was at a ‘do’ last night, being sociable, trying to ‘act’ normal and enjoy what was on offer. My husband and I were part of a group of twelve (you know the sort of thing, long table, partners sit opposite, people either side; nightmare!). Anyway, I was seated next to a very nice lady, I hadn’t met her before so of course we got chatting.
After about five minutes she offered me a glass of wine which I declined, and this is when it starts, always the same ….
You don’t drink?
Because I have epilepsy and it’s a trigger.
What, you’re epileptic?*
Yes, I have epilepsy.
*Sighs* because I have seizures.
Do you mean you have fits?
Yes but I prefer to call them seizures.
Do you thrash about and wet yourself, I saw someone do that on the telly?
Not now because I’m controlled, and there’s more to epilepsy than seizures.
But you did?
Did what? (losing patience)
Thrash about and wet yourself.
Yes and the last Grand Mal seizure left me with brain injury.
God, how embarrassing, I’d die of shame.
(she’s now obviously focusing on me thrashing and wetting myself, nothing else!)
Yes, it’s not very pleasant (dripping with sarcasm).
But you look so normal.
So there it is, there we have it, the crux of the matter. No matter what ails or disables us, if we ‘look’ normal we are, apparently, ok.
It never ceases to amaze me and (no matter how many times I try to explain, educate, raise awareness) it never will, how people feel they can say anything, no matter how personal, how callous, or how hurtful, when it comes to our health.
*Epileptic (adj) relating to or suffering from epilepsy. (noun) a person who has epilepsy. I prefer to say “I have epilepsy” not “I’m epileptic” …. perhaps I’m just pedantic too!!?
Epilepsy. Invisible Disability. Hidden Illness. Brain Injury. You can’t see it, but it’s there.