Posted in Blog

I Am A Patient – Hear Me Roar!!!

I frequently read real life story magazines – I wake up super early in the morning and after working for sometimes 9 hours a day the last thing I want to indulge in is complicated fiction!
Many of the stories centre around tragedy; the boyfriend of five years who turned out to be a girl (“but we were having sex all that time and I didn’t realise”…!!!); the paedophile uncle; the boyfriend who cheats on his fiancée while she’s battling cancer – I’m starting to realise a common anti-men theme here… Better be careful that these subliminal undertones don’t tarnish my man loving brain…!
Anyway, I digress. The kind of story I very frequently seem to come across is the Mr or Mrs so and so who suffers awful symptoms for a tragically long time, however is constantly turned away by GPs and other healthcare professionals and recently having finally been diagnosed with Epilepsy myself, these stories now resonate with me more than ever.

Last month I sat in my consultant’s office where I was told that I had Epilepsy and having explained the symptoms I’d been experiencing over the years he concluded that I’d probably had it for at least six years; he concluded that the majority of my seizures are Temporal lobe simple focal and when I’m under stress or haven’t had enough sleep I experience generalised seizures.

To say the shock at hearing this knocked me for six is an understatement; I felt betrayed by the healthcare professionals who had turned me away throughout those years – who had closed their ears to me and had patronised me before sending me back home; I felt frightened that what I’d estimated but had not wanted to believe was true all of these years had been confirmed to me.

Can I just take this opportunity to say that although I experience the initial feeling of betrayal I am in no way bitter towards the health professionals who missed my symptoms; bitterness and grudges hold no power over me – plus I’m so forgetful I just forget somebody has upset or offended me; when we were kids, my sister and I would argue and fight until we were black and blue and I’d wake up the next morning beaming having completely forgotten about our strife!

Once again I digress…

The point is I recognise that we are blessed to have the NHS and the majority of healthcare professionals are inspirational, hardworking and full of compassion – such as my consultant! But when I read these stories about these people and having had the same experience myself, it poses the question that why are these stories still being ignored now that they are in the public domain? Why aren’t the big chiefs in NHS HQ (imagining a big tower in a scene from a graphic novel right now!) taking note and helping overworked healthcare professionals – there’s a lack of staff, too many patients on GP books and far too many appointments in the day at ten minutes each! How can you possibly diagnose someone in ten minutes??? It took my consultant at least half an hour. Until then, seriously ill patients will continue to be turned away, mocked for their symptoms and dismissed.

However it’s not only GPs shooting me down.

Since my recent diagnosis I’ve also experienced a shocking backlash from people who once called themselves friends; I’ve been called psychosomatic; I’ve been told that by accepting my diagnosis and taking medication I’m showing a complete lack of trust in God; when seizures leave me drained and on the edge of my sanity I’ve been told to buck up and get on with it instead of taking some time to rest and re-gather my strength.
Part of the reason why it appears that I’ve become ill so suddenly and completely out of the blue is, although I have been experiencing seizures for a number of years I’ve kept quiet because in all honesty I thought that I was going crazy; doctors were telling me that I was making it all up in my head and when you get told the same thing by different people over and over again, unfortunately you begin to believe it; after all the Bible says that there is power of life and death in the tongue.

Accepting that something is wrong with you which needs to be fixed is not a sign of weakness nor defeat and anyone who says otherwise is a moron I’m sorry.
I believe in Jesus and I believe that He will heal me, but I also believe in seasons and so that’s how I’m looking at my situation; I’m not accepting that this will be forever, I’m just recognising that this is a season I’m going through and seasons end and that all bad things are made for good. You don’t have to be a Christian to believe that either – there are so many stories about people who once on the right medication to control their seizures live normal lives and sometimes are eventually able to come off medication completely.

This is the hope I’m clinging onto.

If you get a chance I would highly recommend that you take a look at this sermon by Pastor Steven Furtick – he has no idea what I’m going through and yet this particular sermon was recently emailed to be by his team and I’ve found it incredibly helpful:

http://stevenfurtick.com/spiritual-growth/why-everything-is-for-our-good-2/

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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