Thursday, 4 December 2014

Vulnerability

The media or should I say the political parties who get media coverage are always using the phrase "the most vulnerable in society - the young, the old and the disabled". How does it feel to be considered one of the most vulnerable in society? Well it makes me laugh, vulnerability is not something I feel on a regular basis.

The groups that are implied in the phrase "the most vulnerable in society" are those who lack a voice in mainstream politics, although I would argue that mainstream politics seem to cater for the silver vote much more than they do for the young and the disabled. Being young or disabled in this country can make you feel invisible but does that invisibility make you vulnerable? Does it mean every young person is incapable of fighting for their rights and the same goes for the disabled? Under this coalition government the disabled have become more visible through things like the WOW Campaign (war on welfare) and the disabled being featured slightly more in the media. Due to the public spending cuts more children and disabled people are living in poverty than ever before. How can this be when our Prime Minister states that he is looking after the most vulnerable in society?

I could go on for hours about the state of politics in the UK however I know that is not the kind of stuff many of my readers go in for.

I hate the phrase "the most vulnerable in society" as on the whole I don't feel that vulnerable. I am lucky that I have a voice and I am not afraid to use it, I am also lucky not to have to rely on strangers for my care. There have been many stories about elderly people in care homes being abused by the very people who were supposed to be looking after them. They are  some of the people I consider to fall within that phrase, also those unable to advocate for themselves due to their young age or disability. Do I feel that I fall into this group? Not at all. It is a sweeping statement that does many contained within its remit a huge disservice.


No human wants to feel vulnerable. To feel vulnerable is to feel weak, I hate to see myself as weak and needing the assistance of others. When embarking on writing this post I really did consider myself to be outside the remit of those considered vulnerable in society. However on exploring the topic as the words danced across the page I began to realise that I am vulnerable. If hubby was to leave tomorrow I could not look after myself. My life, the independence I value would be stripped away in an instant. With no family near me and unable to look after myself, I could very well find myself dumped in a care home not equipped to look after a person of my age, with my complex health issues. Writing this blog post has made me aware of how vulnerable I am, which also makes me angry when I hear the politicians say they are representing me and others like me, when clearly at a whim they are in a position to push me into an even more precarious position.

There have been times when I have felt extremely vulnerable, when through circumstances I have not been able to advocate for myself. The first time I felt like that was when I was in hospital many years ago. Due to Nystagmus (rapid eye movements) and double ptosis (both eyelids had drooped down and I was unable to open my eyes) I couldn't see. Suddenly for the first time in my life I was effectively blind, unfamiliar surroundings do not help when you feel vulnerable. I managed to find my call bell and summoned a nurse to my bedside asking her to get my mestinon for me. 

For those of you who have followed my blog for a long time will know that Mestinon is a drug used to treat Myasthenia Gravis - you know the illness I don't have. It resolves my ptosis when I take it yet no one has been able to explain to me why it works when I don't have MG. 

The nurse got the Mestinon for me and then placed it on the table at the end of my bed, due to not being able to see I couldn't get to it and I started to cry. Firstly through frustration and secondly through fear. The nurse then shouted at me to stop crying as the doctor would be coming soon and he wouldn't want to see me if I was crying. This lead to me sobbing more due to her complete lack of empathy and compassion. I have never felt so alone or so vulnerable as I did in that moment. If you had asked me then if I fell into the category of the most vulnerable in society I would have agreed wholeheartedly. I had no energy left to fight or kick up a fuss as I normally would have done. The inability to see had left me paralysed with fear.

Once the mestinon had been taken my sight was returned within 30 minutes. That was the day that the neurologist at the local hospital told me I 100% did not have Myasthenia Gravis. His explanation was that in 2007 I had a virus which attacked my brain and had left me with a condition called "Cortical Plasticity" if I took the drug Lamotrigine I would be better in 5 years. In other words complete horse shit. The doctor still to this day refuses to see me in the neurology department as he is still convinced I do not have Ehlers Danlos Syndrome or Dysautonomia. He stands by what he has written in my hospital notes (which he has refused to let me see) and has never actually told me the diagnosis, which was alluded to by another doctor. I had been diagnosed with Somatoform disorder.

For a long time after that hospital stay I was defeated. I had no energy to fight through my husband, family and friends I slowly regained the confidence and strength to start fighting again. At that point in time I did feel vulnerable, weak and exhausted. I felt  I had no voice and no one was fighting for me. It was a hard lesson to learn, in the medical world the patient has to fight for themselves. If you don't advocate for yourself when the medical profession think you should have your own voice, anyone speaking on your behalf will not be listened too. 

It could be argued anyone in that position would have felt vulnerable and I would agree with them. Vulnerability for many of us is a state of mind it is not a permanent condition which is why I hate the phrase "the most vulnerable in society" because many of us in this perceived group are far from vulnerable and are more than capable of making our voices heard. It is a feel good phrase for politicians, it makes a good sound bite but it also tars the old and the disabled and the young with the same brush.

The young, people under 16, possibly under 18 are vulnerable they rely on those looking after them for everything. They do need to be watched over and cared for. The rest of us - the disabled and the old, who don't have to rely on people speak on our behalf because we a physically able and of sound mind are we vulnerable? Obviously if I lost the help I need from my husband such as washing, dressing and leaving the house I would be very vulnerable. If  a person has help and is being abused by that help or the help is abusing its position of trust then yes you are vulnerable. Maybe I don't consider myself vulnerable as I think of it as a sign of weakness?  

Does the phrase irritate me because I feel that this current government on the one hand uses this phrase so easily and with the other is quite happy to paint anyone in receipt of disability benefits as a cheat or a scrounger? I really don't know. All I know is like the rest of the population there are times when I do feel more vulnerable than others.

Just this week I was discussing vulnerability with my mother. I was very sick that day and had to resort to using my oxygen concentrator to help me breath. I had woken up feeling pretty rough and slowly over the course of two hours I developed awful central chest pain and despite clearly being able to breathe whenever I took a breath, the breath felt inadequate. It's a hard sensation to describe, you are breathing because if you weren't you would rapidly fall into unconsciousness however you can't take a deep enough breath to deliver the oxygen you need. The sensation got worse and worse and I finally at 5:30am admit defeat, take some Mestinon and put the oxygen on. Using both I started to feel better within half an hour as long as I didn't try to move around. As soon as I moved / stood up I felt dizzy and my heart raced.

I was alone and feeling I hate to admit it vulnerable. I could have done with having hubby home from work to look after me but he had to take time off the previous week to care for me and we really can't afford to lose his wages. It is horrible to feel so ill and be alone. I try to put a brave face on it the best that I can, this year has been a very bad year for me health wise and I really can't wait for 2014 to be over. Perhaps I will have more luck with 2015.

In my head I feel as invincible as I did when I was 18, in reality I have had to accept my status as being amongst those most vulnerable in society. It sucks.

2 comments:

Stefanie Shea said...

Rachel. This is an important, complicated topic and I really appreciate your words. I also rarely think of myself as vulnerable, but I am. I am also in the same position: if something happened to my husband, I could not care for myself. A year ago, I could still maintain some independence, but it's steadily slipping away despite only being in my early 30s. I think you nailed it: having a voice and using that voice can be the antidote to vulnerability and invisibility, especially politically. The disabled are also invisible in the US. I'll be ringing in the New Year and hoping for a much better year with you. I wish you all the best :)

Stef

Rachel Morris-McGee said...

Hi Stef,

Thanks for taking the time to read and comment on my blog it is always appreciated. I am way behind on my reading schedule at the moment!

It is hard to accept that you are ill let alone vulnerable and all that it implies. Thank you for saying you felt the post nailed it. It is lovely to get such a positive response to something you have written.

Thanks again

Rach xx