27/05/2015 09:19 BST | Updated 27/05/2016 06:59 BST

No, River Island, We Epileptics Don't Want to 'Seize the Day'

I'm epileptic. No big news.

And as causes go, epilepsy is hopeless. It's not even third division. It's not cute, not fluffy, doesn't have the big eyes of a dog or the big ears of a donkey.

It's an ugly thing, utterly terrifying for unwitting spectators, and hugely misunderstood.

Which is why any publicity is good publicity. I buy into this - mostly.

Anything which makes epilepsy slightly more mainstream is to be welcomed so that kids can feel like they aren't so weird after all. And why the bags River Island pushed out in conjunction with the Epilepsy Society should be a good thing.

'Seize the day' they said - what a lark! Look at us eppys, nature's fruit cakes, laughing at ourselves and soldiering on. What a hoot! We even shop in the High Street despite ourselves.

But strangely enough, they aren't right. There is something odd about them. Like a picture where you suddenly notice a strange man in a school playground or a song played in the wrong key. They don't sit well with me.

And I've tried to find the words for exactly why that is.

I can imagine some well meaning soul on a Mac designing them in his studio, imagining this is a clever way to make eppys feel strong.

I can see the gang at the Epilepsy Society thinking this continues their ambition to make epilepsy mainstream.

But good intentions have translated into a language we don't understand.

We don't think like this. We don't see our days this way. Seizures are not part of our narrative of life.

The thing we want to do - more than anything - is own the bits of our life we can control. We never view life through the lens of the seizure. We view our lives as all the bits where seizures don't happen and we are being the best we can be. And we wish everyone else could see us the same way.

I know the feeling of coming round, surrounded by people - wholly freaked out because you have just done bonkers stuff with your eyes open even though you weren't behind those eyes to see.

I've shuddered, flapped, slammed my legs against tables until they bled and dislocated joints - without even breaking into consciousness. And then had to reassure people around me its OK. It's nothing. I'm just epileptic. I'm fine.

Poking fun at ourselves is one way to handle this strange world we inhabit. I used to do it to. Laugh first and no one else can get in before you. Some people are still in this phase. And they will like your bags.

But I know better.

I don't need to be told to Seize the Day. Hundreds like me do that every day we wake up and find the courage to live life like everyone else in the knowledge we are not.

We don't need to laugh at ourselves to fit in. That is a defence mechanism and never puts you on the front foot.

We need to accept ourselves. And through our own acceptance, emboldened, we can help others to find it as well.