Posted in Blog

Epilepsy: Self – Disgust

Last weekend my partner and I went to Windsor and Wiltshire, where we visited Stonehenge. While the museum was a fake (I’ll leave that for another post!), the stones were incredible. Absolutely beautiful.

Since coming home, I feel energised both physically and mentally. More aware of myself. I also haven’t had any seizures for over a week now, which is great.

Yesterday, I took part in a follow up psychological questionnaire about my feelings towards my epilepsy, and I realised that although I’d taken part in the initial questionnaire during my breakdown in the summer, admitting to feelings of disgust towards my condition, I’d very much avoided the notion of feeling disgusting. I’ve come a long way from Wiltshire (I was actually born there), and being back there with my partner was an incredibly proud moment, because I was able to go back to my birth town and I’d remembered the street name through my own efforts – without the help of anybody. I’m utilising this time away from employment to retrain my brain, particularly my memory, therefore being able to remember something from thirty years ago was definitely an achievement.

You Got It Dude

Yesterday, it was incredible to be able to speak to a Clinical Psychologist who also understood Epilepsy – something I’ve never experienced before: somebody who can sympathise with the feelings of dread before a seizure, the desperation to want to be alone afterwards (including the desire to want to separate yourself from your own body, even though you’ve just “left” it and returned, the constant feeling of betrayal you feel towards your body for being so weak and for failing you. I feign confidence because in my mind I realise that I’m becoming more confident as I become more “aware”, however within my body, I feel disconnected because it’s not my own.

I find my body disgusting. I wake up each morning not knowing what state I’m going to find it in and that disgusts me.

Unfortunately this Psychologist practices in Leicester, however she recognised that patients with Epilepsy are in desperate need of Psychotherapy, particularly because of the way we perceive ourselves through the eyes our condition.

She’s going to send me her data once she completes her write up, which will be interesting to read.

I used to blame myself for seizures, which I don’t do anymore, however up until as recently as a few weeks ago I was blaming myself, because if I wasn’t disgusting then I wouldn’t be a failure, and if I wasn’t a failure then I would be like everybody else. And if I was like everybody else, then I would be happy.

However, now I am happy and beautiful. I just have Epilepsy.

I came across this quote yesterday and felt that it was so apt to how I’ve been thinking about… thinking haha:

“We are shaped by our thoughts; we become what we think. When the mind is pure, joy follows like a shadow that never leaves.” – Gautama Buddha

XOXO

Author:

I’m Cece Alexandra and I have Epilepsy. Since being diagnosed, my life has changed significantly. After studying and teaching Humanities and Literature for all of my adult life, I was bullied and lost my job a month before qualifying to become an English Teacher. Once you fail the Teacher Training course in England, you cannot ever retrain; I then became too sick to work because of my Epilepsy. I am now currently studying an MSc in Mental Health Psychology with the University of Liverpool. My disability provokes me into raising awareness for invisible disabilities, which I also actively partake in with Epilepsy Action. Part of that awareness is to help fight against invisible disability discrimination - I believe that this behaviour is not cognitively unconscious; modern society is actively partaking in a hierarchy of disabilities and I believe that there is not enough psychological research to prove this. I am also clinically interested in Cultural Psychology - particularly Collectivist Culture, and wish to pursue this further in my academic career.

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