Things people with Epilepsy want you to know

It is no secret that I suffer from Epilepsy, after all it is in my blog title! It’s now been 8 years since I had my very first seizure and coming up to 6 years since I was given the Epilepsy diagnosis and put on medication. Although the seizures are no longer as frequent one thing that has stayed the same is the reaction and judgement from others before they even get to know me.
Ever since I got the diagnosis, things that I used to take for granted are getting taken away from me, day by day. Every seizure that I have takes one thing away from my independence. Before the diagnosis I was a normal child, I rode my bike until dusk, I was allowed to learn in lessons that felt so utterly boring but in hind sight were the best days of my life. Each seizure pushed my classmates and teachers further and further away. Lessons that I dreaded to enter I soon longed to be in because teachers said it would be better for me to sit in the library all day. I longed for normality but it seemed light years away.
What got me through those days was the thought that school is only temporary and that it wouldn’t be long until I was out in the big world earning a living and being someone. Little did I know that it wasn’t going to be that way. It isn’t easy for healthy people to find jobs but it is a damn sight harder for those with conditions to land one. I applied for numerous jobs every day, many asked for medical history and those were the ones I didn’t hear back from. Months went past and I still hadn’t walked the path I longed for. I was starting to worry that I was never going to make something of myself. That was until I had a reply from a job I had applied for – one of which didn’t ask for medical information until they said I had an interview, the interview sadly fell on a family members funeral but determined to get a job I kept the interview and left the wake a little early. Upon arrival I told them I was here for an interview, they asked for my name and when I told them they replied saying that there wasn’t and hasn’t been a job on offer for a few months now. I accepted that there must have been a mistake and left. However, a couple of days later the same job resurfaced on the website and that was when it hit me, there was a job, they just simply didn’t want the hassle. Now I am more than used to that feeling but when I left the last chance to say goodbye to a close family member for an interview that never happened it truly hits you hard. There was another job that I got close to grabbing but they wanted a note from the doctor that said that it was highly unlikely that I would end up having a seizure whilst working, of course the doctor couldn’t prove that and I never heard anything back.

What upsets me and I am sure so many others is the cloud of stigma that surrounds Epilepsy, it’s not ignorance as such it’s more lack of understanding. People with Epilepsy are no different to ‘normal’ ( I hate using that term) people. Yes we have days that don’t go our way but that doesn’t make us incapable of working or doing normal things.
There is so much us sufferers of Epilepsy want you to know but so many of us don’t know where to even start. We want you to know…

Children with Epilepsy want you to know:
  • Despite what some people think we can still learn in a classroom, interactive smart boards are not going to cause us to have seizures so please don’t take our chance to learn away.
  • We are allowed to read books, white paper won’t bring on a seizure.
  • The chances of having a seizure because we are doing P.E is extremely slim, the majority of us know when we are about to have one so will alert you anyway.
  • We aren’t ‘scary monsters’, or ‘freaks’ so please interact with us, who knows… we may even become your new bestie!
  • Epilepsy is more common than you think – it’s just rarely spoken about.
  • You can’t catch Epilepsy. Epilepsy is not contagious!!
  • We can do normal things. So go ahead and invite us to your party we will be eternally grateful.
  • You cannot fake an Epileptic seizure. Don’t tell someone who they are having one to get out of a lesson, chances are if they could pull off a pretend seizure they would already be in drama school.
  • We are just like you. Yes we may do a little pavement rave from time to time but we really are just a normal child walking the same path as you.

 

Adults want you to know:
  • Despite misconception, we are capable of doing the exact same things as you.
  • We are entitled to be a little off after having a seizure. Imagine you’ve been out until 3am drinking and dancing the night away… the memories of all those horrible hangovers are flooding back right? That is how we feel after a seizure, very hung over and not a single good time to show for it.
  • If we forget a coffee date and blame it on our Epilepsy we aren’t looking for an easy excuse. Many people who suffer with epilepsy also suffer with memory problems, it is in the brain after all!
  • We can still come out and party. Invite us along to the latest festival or night out, we know our limits and will very rarely put ourselves in danger.
  • We are capable of working. We know what causes our seizures so and we wouldn’t apply for a job that would increase our risk. We hate the thought of having seizures just as much as you hate the thought of witnessing one.
  • We are not set up to become nobody. We still function normally!
  • We hate fuss! We know you’re only helping when you tell people to turn the flash off their camera or you warn us when vehicles with flashing lights are approaching but photosensitive epilepsy is one of the rare ones, all we really want is to be treated normally.

 

What everyone wants you to know is:
  • We totally get that the thought of watching someone have a seizure sounds scary, after all, it isn’t something you see every day but please don’t turn against us in fear. We will talk to you about what to do in case we have one but please don’t turn down the chance to get to know us because you don’t understand our condition, it really isn’t that complicated.
  • We aren’t set to become nothing – some of the most well-known celebrities suffer with epilepsy…
    • Prince – whose song “The sacrifice of Victor” is all about his childhood Epilepsy.
    • Dai Greene – Olympic Athlete.
    • Susan Boyle.
    • Katie Hopkins – She recently underwent brain surgery due to the condition.
    • Charles Dickens

And there we have it, many, many famous people have epilepsy but look where they got themselves. Loved by thousands and role models to thousands more. Epilepsy isn’t a ticket to a dead-end road, it’s the beginning of turning dreams into reality only their path will be a little different to what they had imagined. Remember that they are no different to some of the people you idol in films and tv!

If you know someone who suffers from epilepsy, maybe in your school or maybe in your work place don’t look at them any different to how you would anyone else. Yes our brains are a little temperamental but we are still human and want the same things as you and that is to be accepted, so please take a few minutes to go and speak to them, you’ll make their day and only then will you see that we are no different to you.

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2 Comments

  1. 29th September 2017 / 12:52 pm

    My dad has epilepsy, has done since before I was born so I hope I am someone who treats epileptic as they are. Human beings. And yeah seizures can be scary but we shouldn’t be the ones living in fear of seizures when we’re not the ones who have them. Does that make sense?

    • 2nd October 2017 / 9:50 am

      That’s a beautiful way of putting it and it makes total sense. I’m sure you’re doing everything perfectly! Thank you for commenting:)

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