My reality: Embarrassment, shame and struggles

Epilepsy is not pretty, it is not glamorous. You can’t choose a coloured cast for it and make it cute. You can’t treat it. You can’t cure it. You can only manage it.  

I’m not finding writing this blog post particularly easy today. I have had 3 attempts so far and each one has failed to express how I feel and the reality of my life with epilepsy. There are parts of my life and my journey that are easy to share. The comical parts and the parts where I have achieved something despite the epilepsy. Don’t get me wrong, a solid 80 percent of my life is often comical. My family life can only be described as chaotic at best, I strongly believe in every statement I have ever made about epilepsy not defining anyone and I do always attempt to look on the bright side of life. Even in the “darker” blogs that describes both the mental and physical struggles epilepsy brings, I still attempt to look on the bright side. Today, I have made the executive decision to share the parts I frequently keep to myself. The complete reality. In the words of Julie Andrews “let's start at the very beginning, it’s a very good place to start”. (There is not enough space in this blog to start at the very beginning, so let's start at the beginning of Thursday instead).  

At 6AM Thursday morning, I had a seizure. It hurt. It hurt a lot. By 6.07AM my head was pounding, I felt sick and I was exhausted, and I had a bump on my lip where I had bitten it. The sensible thing to do would have been to call in sick to work, get back into bed and sleep for the next 4 hours. The only problem with that was my fear of missing work, fear of losing my job. While I know you can’t be fired for having epilepsy, I still have a fear of losing my job if I take time off because of seizures. I also hate letting my students down, they deserve the best possible teaching and I can’t provide that if I am not there. So, I went to work. One of the biggest mistakes I had made in a while. I was exhausted and I looked it. I cried when I got to work because I felt so unwell. My body was screaming at me to stop, go home and rest because something was wrong. My desire to be “normal” made me ignore all the signs that I was poorly and carry on. That’s when my biggest fear came true. I had a seizure at work. I’m not talking about an absence seizure here; I mean a full tonic-clonic seizure, resulting in wet pants, a banging headache and a trip to the hospital. It also resulted in people that I work with viewing my seizure and the aftermath. I work with some wonderful people and I am sure they had  no negative thoughts towards me, but that didn’t stop me having those feelings towards myself. 

There is such a stigma attached to epilepsy and I spend so much time fighting against it, telling people your epilepsy does not define you, but there are days when it feels like it does. I have those days more often than I care to admit. 

Here is the reality, my epilepsy makes me feel weak. It makes me feel like I am not as capable or as worthy as others. I constantly feel like I have to prove to others that my epilepsy does not hold me back despite being too ill to fully function some days. I will happily tell you about my epilepsy, I will tell you the stories, tell you how it impacts my memory, I will tell you anything you want to know but I will always do my best to not let you see it because the reality is sometimes I am embarrassed. Sometimes I am ashamed that I can’t control my own brain. I cry at least once a week because I long for my old, pre-epilepsy life. I cry because I ache from the seizures, I cry because my medication has made me ugly and I cry because my seizures sometimes make me forget my Dad has passed away and I have to grieve all over again.  

The thought of going back to work on Tuesday fills me with complete dread. Just the thought of it makes me want to cry because I feel so embarrassed. I have been filmed and put on YouTube, robbed and beaten up when I have had seizures in the past, I would take all of that over having people I know witness my seizures. On Tuesday I will have to swallow my fear, pull my big girl pants up and pretend don’t care until, eventually, I will believe it myself.