by | 2 Jul, 2019 | Epilepsy

The ‘E Word’

When people discuss co-morbid metal health issues and ongoing conditions the main focus is often the difficulty of coming to terms with one’s diagnosis. When it comes to epilepsy I never had to do that, I was diagnosed at the age of three, it’s always just been a part of who I am. However, every single day I have to come to terms with the daily impact it has on my life.

As the ‘summer’ approaches I’m feeling a huge amount of pressure to finally start getting somewhere with my life. In October, it’ll be a year since I graduated and if I’m not at least on the road towards a career of some sorts by then, I’m really going to feel as if I’ve failed.

The past eight months have been nothing but a battle for me; clusters of up to 30 seizures every two to three weeks, two medication swaps, seven hours in A&E and enough appointments with my consultant that I’ve actually lost count (even though I normally only see her bi-annually). People speak of the infamous ‘C Word’ but for me it is the ‘E Word’ that is having both direct and indirect effects on my entire life.

It is not my fault that my seizures have drastically increased in both severity and frequency. It is not my fault that having these seizures and the medication I take to supposedly control them drains every drop of energy from my body. It is not my fault that recovery takes up to a week of doing practically nothing whilst in both physical and mental agony. But I still feel angry every time I can’t or choose not to do something because of my epilepsy. This is how it directly affects me, it holds me back and limits my abilities.

Despite all of this, however, I have made attempts to start moving forward and on multiple occasions have simply been turned down and thrown away. I know all jobs are hard to get, but when you fit the bill perfectly and even after being offered feedback don’t receive it, the only logical explanation is fear and ignorance about the fact that I have epilepsy. I am admittedly jumping to conclusions here, but the research says it too (simply type epilepsy unemployment into google and the studies say it all). I understand the reasoning why the whole employment market seems to be so discriminatory.

Rewinding back to my first term at uni I experienced just this. I missed a group get together as I’d had a seizure two nights previously and had to take a clobozam pill meaning I slept through my alarm. At class that week the girl ‘leading’ the group refused to work with me again because I was unreliable. I mean who wants work with or even worse pay someone who is going to have to take a whole week off twice a month?

There are aspects of my life that are currently good, but even those are overshadowed by a big e-shaped cloud of darkness. It isn’t coincidental that I’m the lowest I’ve felt in over two years just as my condition becomes even more uncontrollable. I know there are things I can do to improve my life, like going to sleep instead of writing a blog at 3am) but I’m currently stuck in a never ending loop of limbo. On so many occasions over the years I’ve ended blog discussing how I wish I could end on a positive note. This is unfortunately not one of those occasions. All I can do is keep my fingers crossed and hope that the light over the horizon finally rises and begins to guide me in the right direction.