Thursday, 8 November 2012

"Chronic Fatigue Syndrome" My Arse!

When you are ill and disabled, you end up taking on vocabulary that is not your own. This can be in the form of medical language, of Latin names, of obtuse and previously unknown parts of your anatomy which suddenly become foreign to you when spoken in this foreign tongue.

But there are also more subtle uses of language which means you end up using someone else's words. I came across this recently when I had the review from social services. I had been receiving help from what is called an enabler, which I'd never heard of before, but it is literally someone that enables you to live your life, to be yourself, and to be out in the community. I thought it was a really good title, because it was such a positive affirmation that I did not need someone to do things for me, or take care of me, I needed someone who enabled me to be myself.

However now the government has decided to mess around with the language. Someone can only be called an enabler if they are doing short-term rehabilitative work, and although I still get the same amount of money further help it is now classed as being “Daycare". When this change was made obviously no one thought what a disempowering, nonpersons centred and demeaning description this was, and how inaccurate it was in describing me all the type of help I receive. And obviously no one asked someone he was disabled how they would feel about that change, otherwise I think the resounding contempt for it would have made them change their mind.

Sometimes medical language can completely obfuscate the real experience of the person who is ill. This hit home from me recently in an article written by Scott Harris in the Guardian regarding the sad and tragic death of his friend Emily Collingringe who died from chronic fatigue syndrome. He reflected that even the doctors and the public who have finally accepted that chronic fatigue syndrome is a genuine neurological illness and not psychosomatic, even among these people the illness is still called CFS which is still a:  

“ridiculous name… which is almost as damaging to ME sufferers as the symptoms we suffer. Fatigue is what a person feels after a hard work day or an intense session at the gym. It is a gentle tiredness that makes the back ache slightly and the eyelids a little heavy. It is cured by a nap or a reviving espresso. Collingridge was beyond bedridden. She was crippled by incessant agony and dependent on morphine. She was fed through a tube and her body couldn't cope with noise, light or movement. She was doubly incontinent and experienced periods of both blindness and paralysis ... She is now dead. To call the illness that savaged her "chronic fatigue syndrome" is like calling stomach cancer "chronic upset tummy"."

The language given to something or someone shapes how they are seen. It is a filter through which the truth becomes distorted. How the medical profession see us it affects, how the public see us, it even affects how much funding we are given a research, how much drug companies invest in us, and how easy it is so get benefits such as incapacity benefit or disability living allowance.

I refuse to call my illness chronic fatigue syndrome because it does not in any way accurately express the experience I have. I think that's if it was called extreme exhaustion and unrelenting pain syndrome, it would be taken more seriously. But sadly it is usually not disabled people who create the language of their experience, it is something imposed on the. This misrepresentation is for ME sufferers "almost as damaging ... as the symptoms we suffer".

So, Chronic Fatigue Syndrome? My arse!

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