Why I blog about epilepsy

 It has been a really LONG time since I last sat down to vlog and for that I can only apologise. Life has a way of getting in the way and as we all know this past twelve months has been crazy and I lost my motivation for a while. On a recent all-inclusive stay in my local hospital, I met someone who reminded me why I used to blog and how important it can be to share your story.  

There are many reasons why I first started writing this blog. one reason being how cathartic I find writing. Writing provides me with an outlet for the feelings and frustrations I feel living with epilepsy but the most significant reason for ever starting this blog was to share my story. To show life with epilepsy in all its hideous glory, the good days, the bad days and those days I am almost too scared to mention. Deciding to share my story was not an easy decision and there are times where I still doubt whether it is the right thing to do. We live in a world where we share our lives constantly on social media. We update our status, post photos to Instagram and snapchat every meal we eat or road trip we take yet despite this constant stream of updates and photos we very rarely show the negative parts of our lives, the darker days where we are unwell or have had our heartbroken. We don’t upload photos of ourselves looking like we have been dragged through a hedge backwards instead we upload filtered photos of ourselves and claim we woke up like that. We all share so much more than we ever did thirty years ago and yet we never talk about real issues.  

I have mentioned this before in numerous blogs, but when I was diagnosed with epilepsy there was very little information available. Google could provide me with all the medical terminology and descriptions of what a seizure is but it couldn’t tell me what it was really like to live with epilepsy, if what I was feeling was normal or how epilepsy really effects people. When I was diagnosed Facebook was all the rage, everyone and his dog had a profile and there were groups set up for everything you can imagine, except epilepsy. It was like it didn’t exist. The only group I found was a private group where everyone wanted to keep their diagnosis a secret, like it was something to be ashamed of and it took me a long time to realise that it is not. I wasted a good two years of my life trying to hide my epilepsy, and myself, from the world because nobody had taken a stand and said “hey, its ok, epilepsy is not something to be ashamed of”. I decided to be that person. To write about my experiences and share them with the world in the hope that it might one day help just one person realise epilepsy is nothing to be ashamed of and it does not stop you from living life or achieving your dreams.  

There have always been mixed reactions to blogs, vlogs or anything else that discusses an illness, struggle or condition. Some people love it while others see it as attention seeking and this is something I want to address. Having epilepsy, whether you talk about it or not, is an attention causing condition. Epilepsy likes to be seen and heard and, in my experience, loves nothing more than a public audience. Take it from someone who has been filmed having a seizure and put on YouTube, if you have a seizure in public people are going to notice. Most of the attention it brings is unwanted and more often than not embarrassing. There is no glory in the world knowing you had a seizure and pissed your pants. The world does not need to know that. What it does need to know, however, is how epilepsy impacts life, real life and sometimes that includes sharing with the world that you wet yourself. When I was writing my book, I spoke to a neuroscientist about epilepsy and he said something that has really stayed with me. He said how as neuroscientists they research the brain and seizures and all the scientific side to epilepsy but they actually have no idea how any of it impacts daily life or the individuals with the condition and that, ladies and gentlemen, is the problem. Every book, article or website you look at in relation to epilepsy only tells you about the science behind the condition it does not tell you what it is like to live with the condition and when you are newly diagnosed and afraid you don’t want to know about the neurons or synapses, you want to know if you can go to university, if you can drive your car or if you can have a family.  That information was not there when I was diagnosed and that is why I started this blog. If telling the world, I pissed my pants having a seizure helps just one person understand epilepsy is not a life sentence and does not mean giving up on your dreams than bring on the Tena lady and let's get this show on the road.