There are lots of aspects of epilepsy which I hate but I think possibly the worst is ‘The Look’.
Maybe it’s just me but I have found that there is a certain look which people give you when they are risk assessing in their head how your epilepsy is going to impact on a situation they are in control of.
I like to think my epilepsy won’t stop me from doing anything and I am always really open about my epilepsy, I have been very lucky because my family and friends have always been really supportive and understanding. But it’s when you get into the world of businesses and the main reason for it I guess is the suing culture we now live in.
So I’m talking about when I sat in my occupational health appointments at work and they say ‘sorry you aren’t safe to work with the children on your own in case you have a seizure’ and then at the gym when they said ‘sorry I don’t think it’s safe for you to use the equipment more than walking in case you have a seizure’.
So why do I bring this up now? Well finally at our adoption appointment last week, they said we would be put forward straight away if it wasn’t for my epilepsy but ‘they’d have to speak to their manager’ accompanied by ‘the look’.
The Look is also usually accompanied by ‘are you sure you don’t know what triggers my seizures and I have no warning?’ with a slight air of desperation. I would give anything to know my triggers and to get a clear warning, but the fact is I don’t, asking me over and over isn’t going to change that.
I suppose I should in a way feel good because ‘the look’ isn’t one of judgement, more one of disappointment… so I fit all the criteria for whatever they want really well, they just can’t say yes because I am too much of a risk.
The thing is there is nothing I can do about the possibility I might have seizures (and even if they are now controlled on Keppra it will be years until anyone can really rely on that because my seizures are so far apart) so there is nothing I can do about ‘the look’ other than not to even try for these things, but I don't want to do that either.
I guess that’s why underemployment is so high in people with epilepsy… there’s only so much of ‘the look’ you can take.