Politics, the NHS, Disability and Disillusionment

I consider myself 'Political', for goodness sake I am finishing my Politics degree at Aberystwyth University, but inside I am conflicted. I believe in politics, I have read John Locke's 'An Essay Concerning Human Understanding', I have read Thomas Hobbes' 'Leviathan' and I have read Jean-Jacques Rousseau's 'The Social Contract', so I can understand the concept of why we have a government and that within our human nature we have had to bind ourselves together and to give over part of our human natural state, to the governing system within our country, for the betterment of all of us.

Let me make something clear, I am not a raving Liberalist, I'm not hiding out in the mountains building a militia, I don't want independence for counties and I don't like the federal system within the United States. For all intents and purposes, I started my political life at 18, when I first voted Conservative. And it’s from there that I have tried to somehow come to terms with the choices I have made, the values and morals that I hold for myself and the reactions and consequences of my votes.

I was happily oblivious to politics and life until I went and moved to a different town's Sixth Form College. And suddenly I was thrust into the middle of a political rite of passage. I chose to study English Literature, Classical Civilisations, Government and Politics, History, I.T and General studies although after your first year you're encouraged to drop three. So I kept English Lit, Classical Civ and Politics, and this is really where I became aware of the world around me. I remember the American Presidential elections, and we were following it as a class project, right from the campaigns beginning in 2007 until his inauguration in 2009. We all sat up that night and watched an African American man become the first Black President...and he was chosen as the Democrat candidate over a Woman... it was amazing.

So turning 18 and making the conscious choice to vote conservative on a more moral stand point, the old conservative values of 'Marriage, Children and Church' but I also believed that everyone should work towards their own goals, should be able to own their own homes, I was naïve. I knew of course that there were those that were on 'benefits', that 'social housing', 'council houses' existed so I knew that there were people less fortunate than myself, but I still believed that by giving my vote, my part of 'the social contract' so to speak, that the country would move forward and progress.

However this is where the second part of my title becomes apparent. In 2006-2007, I started to become ill. Desperately ill, I thought I was going to die. I didn't have cancer, I didn't have any sort of disease, my doctors didn't even believe me when I came to them crying for help with my mother there begging beside me for them to do something. It started with tremors, in my hands, my legs, my neck, my feet and my toes and fingers, these progressed to what I now know were called Myoclonic Jerks or mini seizures to the non medical professionals. I then progressed to full blown seizures, and from these seizures I would get side effects: loss of speech, loss of swallowing reflex, paralysis in my left arm and full paralysis from the waist/hips down.... I spent 6 weeks in hospital and this finally had happened after over a year and a half in which I had been poked and prodded by the country’s numerous Neurologists, in which I was mistakenly told that I had Progressive Myoclonic Epilepsy, and separately told that I could have months to live... I thought I was going to die.

But to the background of this, to keep myself sane and thinking and participating I carried on with my A-Levels... Through the many hospitals and beds I carried on, I was determined to finish my A-levels even if it meant repeating my second year. But at the end of those six weeks I was taken to a hospital in Birmingham to see a 'Specialists Specialist' I was told with a smile. And he gave me the verdict, the final diagnosis, the weight hanging over my head was either going to drop, or lift and this man who sat in front of me, surrounded by his registrars, all looking at me with fascination, had the answer, the final say. I had what is called Conversion Disorder, now renamed as Functional Neurological Disorder.... and I wasn't going to die.

But don't get excited, this is where my journey really begins. Supported by my childhood, the love of my mother and sporadically the occasional madness from my father and his third wife (crazy, slightly obsessive, academic, lovely but annoying sometimes bless her – thank goodness she's the one who has stuck it out), supported by the knowledge that justice will prevail damnit, that I would get better and live a normal and healthy life, I was actually told that this would stay with me forever. I was told that periodically I would have relapses, that I would have these seizures, I would need to be hospitalised with specialist Speech and Language therapy, that each and every time it might take a little longer to learn how to walk again depending on the severity of my seizure. I was told this and then I was told that was the end of my appointment, with this man who had just given me this news, the weight still hovering dangerously over my head. But now I had the knowledge that people would never understand or look at me in the same way again.

Conversion Disorder/ Functional Neurological Disorder is classified by Kings College London's Institute of Psychiatry (research paid for by the Medical Research Council) as 'neurological symptoms (most commonly seizures or ‘stroke-like’ symptoms) that are presumed to be of psychological, rather than neurological or ‘organic origin' and, believe me, that is one of the nicest definitions. I was to a lot of people now 'mental' or a 'head case'. It used to be called 'Hysteria' and anyone who has recently seen the movie 'A Dangerous Method' will understand the notion of 'Hysteria', a woman becomes frustrated, whether it be sexually or emotionally and they 'act out' these frustrations through physical symptoms. I have been called a faker, I've been spat at, called horrid names, I've had doctors turn and look at me when they see 'Conversion Disorder' on their screen and look at me completely differently as if everything about me is made up. As if my paralysis isn't real, or this chest infection I’ve developed could all be just 'in my head'. Functional Neurological Disorder as it’s been named – to get away from the Hysterical connotations I presume – is an invisible disability. I call it invisible because no-one can see it and once I'm over the year it took the first time to start walking again, then I am back to being one of you, one of the normal people.

But this time it's different, my doctors have become used to the diagnosis, they have put strategies in place to care for the needs I have when I have these 'episodes' or 'crises'. But again, this time it’s different, I've skipped over three years, I'm eight weeks away from giving in my final piece of work for my degree, I'm so close to graduation I can taste it. But suddenly I'm the disabled girl again. Stress over bullying, a miscarriage (yes the pregnancy was planned), and generally getting unwell has brought on my FND full force and I am laid in my bed, back in sunny and beautiful Shropshire, away from university, paralysed.

I was in hospital this time for two weeks, 12 days officially, but this time I had to have a nasal-gastric tube placed down my throat because my swallowing reflex wouldn't come back on its own. I'm at home, I have to have a carer and she's become near enough my best friend in the world. She's seen me at my lowest, she's seen me sobbing in the shower because I don’t have the energy to wash and condition my hair AND shave my legs or most of the time, do either. She has seen my struggle to get my clothes on and had to intervene before I hurt myself in the process and she's had to make every meal I've eaten in the past 2 weeks, because I don't have the energy to do it myself.

This isn't normal for my FND, this is new... 'this' the doctors are starting to suspect is Chronic Fatigue Syndrome, or more commonly known as 'M.E'... and people again don't recover fully from this new disease.

The reason I am pouring my heart and soul into this long and arduous article is to highlight a number of things. The Healthcare in the country is shocking to someone with an 'Invisible Disability', THE PEOPLE OF THIS COUNTRY are shocking and many times abusive to those with an 'Invisible Disability', there is little support other than counselling, as if somehow talking about my feelings is going to get me jumping from my 4 year old NHS wheelchair and scream 'I'm CURED', for some people it might work, for others, like myself, it didn't, it only made things worse.

The second reason I am writing this, fully expecting to not have anyone actually see it, read it, let alone print it, is that I had this feeling of promise deep in my heart for politics – my student debt should attest to that- that voting made a difference, that supporting a party would allow our constituencies to gain support of the government should things get bad and that things would change. But only over the last few days, weeks and months the government is rolling out more new changes to the benefits system for those that are disabled and cannot work. We are being asked to undergo 'fitness for work' tests, the guidelines for getting Disability Living Allowance are being restricted, with those of societies most vulnerable being left behind under the headlines of cost cutting. I applied at the very beginning of February, it is now the end of March, my doctors are dragging their feet sending off the medical evidence and even then with the new guidelines I may not even be awarded anything. I am Paralysed, yes that seems like an unfair statement to someone who is permanently so, but given that I could be in the condition for over a year plus, I kind of think some return on my National Insurance contributions that I have been giving and will be giving in the future is not something that is a hardship considering that I will in all probability give more back than I take out of the government's kitty. David Cameron is who I voted for, his son was disabled and I know I need to tread carefully, but he claimed DLA for himself and his child to make things better for the little guy whilst he could, but I'm starting to wonder where the compassion has gone now?

I am living in my Mothers living room, I have £14.89 to last me till April 23^rd, when because even though I am at home I am still doing my degree, I will at least get my last ever student loan instalment. Being disabled is expensive. Special considerations are needed, taxis as a basic – if you can find one that will take a wheelchair that is. What about rent going un-paid at your student accommodation because it’s not wheelchair friendly? What about picking up the paper on an almost daily basis, to see the words 'BENEFITS CHEATS' and wondering whether someone thinks you are too, what about the buses that drive past you so they don't have to stop and help you get on, that would lose them time? What about the Thousands of people like me, with varying degrees of 'invisible' and 'visable' disabilities who have no support from family as I luckily do, even though things are extremely tight? What about you pushing yourself down the round and having scathing looks thrown at you when the aisles between clothes in shops are cluttered or too small for a wheelchair to pass and you have to ask for help, and a nose is turned up at you?

So to come back to the basis of my article, I have lost faith in the government to a degree that they aren't willing to protect me in my vulnerable state any further than making sure someone cleans me up and feeds me when I'm able to eat. I have lost faith in the NHS, that they are capable of treating me with any sort of decency or respect for no other reason than because my body likes to take its emotions out on itself, I have lost faith that I will be able to gain employment because I am disabled, that I will cost companies money to employ instead of making them money.

But what I do have is faith in myself, that I am a fighter. This may not be a well organised article/letter/whine however you may want to put it, but I will fight for everything I deserve, I will fight to work, to live and to be able to support myself, even if I have to fight for the support to do so along the way. Because like many with an invisible illness or disability, we don't want to be ill, we don't want our relationships to break and shatter because they have been put under only the strain that a disability can put on a relationship, we want to have families, we want, if our bodies allow us, to get a job and earn money and for the first time in a long time feel respect for ourselves. We are just like everyone else, but unlike everyone else, we are overlooked at interviews, overlooked by the government who believe that things are not that bad out there, we are overlooked by the majority of medical professionals who believe that we should stop using the internet to create ourselves more problems.

So here I am, laid out in bed, typing with all the energy I have left, something I know will probably never be seen. But for myself and my family, for my friends with and without disabilities, for those with Conversion Disorder and those with M.E. I thought I owe it to us all that I write what we are all thinking. That we have been let down by the people and the government we have given a bit of our freedom too.

So thank you for reading, and I hope you take away even a small grain of sympathy or feeling of injustice for those of us in an impossible position, maybe open a door for someone looking tired or exhausted one day, because maybe they have Chronic Fatigue/ M.E. Maybe you could move a chair or a table in a restaurant without making a huge deal so that a wheelchair can get past without the one in it feeling like a freak show. Maybe you could write to your local M.P. To ask them what they are doing on the behalf of those that are vulnerable and disabled in your area, maybe you can grow a social conscience?

Or maybe just do something for someone else because it is the kind thing to do?