by The Chronic Chronicles | Dec 31, 2012 | Benefits
Imagine this scenario.
You’re need a job, but there’s a new system in place – in the form of one single interview.
You don’t fill in an application, or apply for a job that looks right, instead you sit in front of someone. They’ve never met you. They don’t have your CV, your history, your qualifications. All they know about you will be gained in the next few minutes and by looking at you. They ask you a list of questions. They seem quite irrelevant – none allow you to explain what skills you have, what your strengths are, or enable you to sell yourself. The interview ends, and there’s so much more you want to say, to explain. At the end they hand you a piece of paper with your job and salary on.
You splutter at the unjust nature – how they can decide what you can do without knowing your background, just by looking at you? They have no training in employment, or in your specialist area. Yet they’re deciding your future.
That’s exactly what happens when assessing whether a person with a disability can work or not.
The assessor is not usually medically trained. If you have a rare or complex condition, they won’t receive any information about it beforehand or speak to a specialist. They do not receive your medical record, any consultants letters, etc. They have set questions to ask they may have no baring on the condition. It does not take into account someone who may be reasonably well one day, and bedbound the next. Or the complexities of your situation, or the reality of your day-to-day life.
They judge you just by looking at you, which is difficult for all the thousands of invisible conditions out there.
And it’s just getting worse.
Thousands die each year after being found fit for work or other benefit cuts.
Would you want your life to be decided by someone who knows nothing about you? Who has no training? Just ticks boxes that do not relate to you in any way?
No? Then why should the disabled people of Britain face this?
Atos (Photo credit: Wikipedia)
by The Chronic Chronicles | Dec 16, 2012 | Coping Methods
A strong emphasis that seems to surround pain management and long-term conditions is acceptance.
It took me years to get to a certain level of understanding about what was happening to me. In the early years I spent literally thousands of pounds visiting all kinds of complementary therapists, buying supplements and trying the new fads. I was searching for a cure.
This probably lasted until I was diagnosed with a condition that’s incurable and so I had to adjust my thinking from ‘a cure’ to ‘management’ and also empowerment. I had to learn that my pain wasn’t going to vanish as soon as I found the some right type of massage, or the right acupuncturist. I had to try and take control of my own condition by trying to make the world fit my condition as best as possible. I had to say no to things I knew would impact on me, I had to find the right type of work, get the right kind of car, get a stick to help me walk, etc. I still continued the couple of treatments that gave me form of benefit, and stopped the others.
However, I still continued to hold on to some kind of hope. This was in the form of a particular issue with my lower back – which out of all the pain I deal with, and all the symptoms – the pain is my back is probably what impacts my life the most. It stops me sitting comfortable, and walking properly, and the pain is constant and severe. I begged for years for an MRI, or just for someone to find out why my back was so bad. It was different to the other general muscular pain, or joint flare ups, and finally I was given an MRI this year. This led to a referral to a spine surgeon who I saw last week.
The surgeon explained to be the damage in my spine is in the wrong place, and any surgery would just cause more damage.
I knew in my heart of hearts that would be the case from the research I’d done, and I smiled and nodded at him.
Yet, it hurts. I think I was holding on to a lot of hope that I would still get some kind of magical cure for my back. I realised when I was driving to work yesterday and my eyes suddenly filled with tears, because in many ways this is it. I really do have to come to grips with the acceptance milarky – with no ‘yes I understand this is it, but hopefully they’ll be able to help my back.’ There will be no cure. No treatment that will make it go away. No surgery.
It is simply about management now because that’s all I have, and trying to fight to right regime of medication, life-style choices and on-going pain management.
But it’s the fight, and the hope that keeps me going. I guess I just need to find the right balance.
by The Chronic Chronicles | Dec 15, 2012 | Opinion
Have you ever experienced a scenario where you’ve had a cold, a bad foot, or insert your own recent issue – and someone has said “have you tried taking Vitamin C?” or “have you tried daily stretches?” or “Have you tried being more positive?” or “You should just meditate daily. My aunt did that and her arthritis cleared right up.”
It’s often well-meaning or innocuous.
Now imagine you have a long-term chronic condition – of any kind. Think of that advice coming from your GP, your physiotherapist, your Occupational Therapist and your support worker. And then your aunt, your colleague, your friend, the waitress in the place you grab a coffee every now and then. And then… you get the picture.
And you heard almost every day, “Have you tried yoga?” “Have you tried cutting sugar out of your diet?” “Have you tried this new revolutionary herbal supplement?”
Those people still mean well, they want to help. In actual fact it can do just the opposite. It can be exhausting, frustrating, patronising or even rude. Sometimes you just want to vent – say ugh, I really can’t deal with this pain anymore. Often they just need some sympathy or empathy in return – not a suggestion to solve it, as it may simply not be solvable, or they can sort it themselves when they feel able.
The vast majority of people with ill-health goes through a long acceptance period. This can involve a vast amount of research, visiting many specialists, trying lots of treatments including many complementary therapies. They get to know their body, what is right for them and what isn’t.
Everyone is different, including people with exactly the same condition. For some people acupuncture may be fantastic, for the next it can be useless.
It’s a fine line – because sometimes someone may have a suggestion that will genuinely help, but please do think before you offer unsolicited advice to a chronically ill person.
