Posted in Blog

I’m An Adult, Listen To ME! More Racism in Epilepsy :(

Hey everyone,

I’m exhausted. Although I’ve been a busy bee creatively, mentally and health-wise, I’m just done. I came across a study in the early hours of the morning, shared on Twitter by Epilepsy Research UK on seasonality in epileptic seizures and I was disappointed to find that as a Black woman, once again, the NHS has let me down.

You can read the article here. The gist of the study was that a significant effect was found between seasonality, vitamin D levels and seizures, which means that Black people with Epilepsy are being let down again.

I’ve come to trust my Epilepsy team. I’ve been with them since 2014, when I first moved to London and grown to trust them.

However, lately I’ve become more and more frustrated with them. I’m feeling dismissed, cast aside – especially because we have such a good relationship, when I raise concerns, it feels like I’m being talked and walked over at times. I feel like they are treating me like a child instead of an adult. Last night I was so wound up after reading this article, I couldn’t sleep, which is detrimental to my Epilepsy, and after talking to my girlfriend I felt like the only solution was to go to another hospital and start afresh.

I’ll walk into the new consultant’s room as an adult

I thought.

But upon reflection, I realised that wasn’t right! I’ve built up a relationship with the Homerton Epilepsy team. I’m not going to run away. They must look after me.

And I’m a fucking adult!

So I sent my Epilepsy Nurse this email:

 

Screen Shot 2018-03-06 at 23.34.52

Hopefully, I’ll be listened to.

I’ll keep you all informed!

XOXO

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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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