Friday, 23 May 2008

Just Coping

Being long-term ill or disabled is a real challenge, not least because alongside any direct symptoms you also have to cope with new societal prejudices.

The language of ‘winning battles’ with regard to illness, has always bothered me. People coping with cancer are very frequently described as ‘battling’ the disease. If they are successfully treated and go into remission they are described as ‘winning the battle against cancer’. Media or public reports if someone dies of cancer will often include the phrase: ‘after a long and courageous battle they lost their fight’ – implying a wilful weakness on their part.

I understand the sentiment but deeply resist the metaphor. Very simply the language of warfare is totally inappropriate for those suffering illness. In a war there are winners and there are losers (in my own opinion, in war, everyone is a loser – but you get the point!). Winners are seen as strong and courageous, losers as weak and cowardly. To use this language is to risk pushing the comparison to adverse extremes, perhaps imagining that those we perceive as losing their battle or not fighting hard enough, are weak and gutless.

As I said, I do understand the sentiment as we should admire those who we see coping with great strength and fortitude, but I get very cross when I hear outside observers judging the ill and disabled if they are deemed to not be coping well.

On the flip side, I also understand how annoying it can be to hear someone going on and on about how ill they are or how little they can do. I remember a friend of my Mum who was forever complaining about her many problems, in stark contrast to Mum who suffered (really suffered!) in silence. I'm not extolling the virtues of suffering in silence as we are being encouraged by psychologists to be honest with ourselves and with others about our emotions and feelings, but the truth is that are patience runs thin very quickly.

Speaking of psychobods, I know that part of the reason I am writing this and part of the reason why I get so annoyed when I see people using the language of warfare, of winners and losers, and when they judge those who are vocal about their suffering, is that at times I feel judged and I feel weak and overcome because of my illness. I judge myself by how well I feel I am coping.

I have suffered with chronic lower back pain for almost 10 years now. It has gradually got worse and now includes pain and pins and needles radiating into my left leg which means that I use crutches to help me get about. I have Degenerative Disc Disease affecting L3/4, L4/5 and L5/S1 and I need a 2 level Artificial Disc Replacement – not available on the NHS at present. The constant and extreme pain severely limits my mobility and my days are spent trying to get comfortable.

The stories of people who fight on and show great courage do inspire, but they also make me feel weak – this is despite the truth that I do what I can. Even knowing that I do as much as I can and that I remain positive and hopeful, I am made to feel as if I should be climbing a mountain or doing a 20 mile run for charity. Then I would be described as ‘courageous’ and ‘winning the fight’, and I could look back on this period as the time I ‘overcame’ my physical problems.

Despite the fact that I am on Income Support and have just applied for Disability allowance, despite the fact that my pain is overwhelming, has stopped me working and means I go out maybe once a week, despite the fact that small tasks make me tired and I am often incontinent at night – despite all this I know that I am strong and that I cope in the only way I can.

I don’t want any awards for winning the battle against Degenerative Disc Disease, I can’t and don’t want to do a bungee-jump - I just rest in the knowledge that I have got through another day and that for countless millions and I, this is the greatest of challenges. Getting through the day will never win any awards - its not public enough, but it is no less courageous and the sufferers are not weak because they can't climb the highest mountain or trek the Andes.

We all cope in the way that we can – in the way that gets us through, and we should be far less judgemental towards others because everyone who suffers (which is everyone) will do what they need to do. Some do run or jump out of planes, and some write and read and think, and some rest and lie down. Some are quiet and some speak of their pain. Some surround themselves with family and friends and some hibernate – but we all cope.

Yet again the wonderful idea of being 'normal' and being judged by that standard, strips us of all that gives us strength. We judge and are judged by our relation to the norm and we miss the beautiful point that we are all unique and loved and strong and whole.

I’m not fighting a war. I’m not involved in some triumphalistic battle between good and evil.

I am coping.

I am getting on with my life – just as it is,

and I invite you to rejoice with me,

to cry with me,

to scream with me,

and to dance with me.

Just be there and cope with me,
but don’t judge me!

Maybe then I will stop judging myself!

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