Disabled or sick ?

Yesterday my attention was been drawn to an excellent article in the Guardian about one person's attempt to return to work after having made a partial recovery from the depths of M.E. In the article, Melissa Viney sets out the difficulties of trying to move back into the working world when one has a fluctuating chronic illness like M.E.

For a long time now, people who receive Incapacity Benefit were in a sticky position if they began to think about a gradual return to work because, as Melissa says

'....IB has been a rigid, all-or-nothing system; you can work, or you can't. It takes no notice of the many chronic and fluctuating conditions .....'

From next week (October 27th) a new system, ESA (Employment and Support Allowance), will begin. This will divide claimants into those who are deemed able to do some work and a much smaller group who are deemed unable to work and are therefore excused and given a higher rate of benefit. Since the Government aims to cut the number of claimants by 20,000 p.a. you can imagine that there will be an onus on DWP Assessors (who are woefully misinformed about conditions like M.E) to take heed of the new, more stringent criteria by which people are judged to be capable of work and try to get as many people as possible in the 'able to work' category. It will remain an all or nothing system: a system which fails to address the needs of people with fluctuating conditions and which makes it almost impossible for such people to return to work with any confidence or feeling of security. If their health begins to falter and they have to give up work and have a lot of time off work, how quickly will their benefits kick in and provide a much needed safety net in terms of finance and confidence ?

Apart from clearly setting out her story and imminent changes in the benefits system, Melissa's article strikes a chord because she discusses the issue of the difference between disability and sickness. It is something I have struggled with ever since diagnosis. I have spent my life around disabled people and have always appeared to be able bodied, healthy, resilient. In fact I have been living with M.E. for over 30 years and have often felt so unwell that I have not known how to get through a working day. I have had blocks of time off work (two weeks here, one month there, three months here, three days there). I've ducked and dived my way through College, University, career because I felt there was nothing really wrong with me that a few days rest wouldn't cure --- even when a different reality was staring me in the face: it isn't normal to spend every day feeling ill and struggling to get through ordinary routines at work and home but I was always told by doctors that I was 'just unwell.'

In my last job I worked for a charity which was developed and run, in part, by disabled people: people who used wheelchairs, people who had had strokes, were deaf, blind and so on. How could I compare myself to them ? They were disabled. I just felt poorly. Some of those people would be judged unable to work by the DWP --- though they did work jolly hard. Some were paid and some worked voluntarily. Even so there was a recognition that their lives were impaired by their disability and they were supported through additional benefits, support in terms of better access to buildings and information.

I felt then, before diagnosis, and even now, that none of that kind of support or understanding was available to me. I still have the sense that I am 'just unwell 'and with that an implication that there is a possibility that I can get better, back to normal. I have the sense that, somehow, in the pecking order, I am perceived by many to be more fortunate than someone who is seen as disabled. In some ways I am.

I can walk unaided mainly.

I can hear, see, speak.

I have a normal level of understanding and intellectual ability.

But all these aspects of my self are impaired in some way and every day, every moment is a struggle.

Nobody seems to really understand that there are days when, if I can get out at all,

I too need to go up the ramp instead of the steps,

I too need noise levels reduced so I can concentrate,

I too need the understanding that I have difficulties in terms of concentration and memory,

I too need a special diet and reduced chemical levels so I don't feel dizzy, sick , confused.

I too need reduced and flexible hours because I cannot work a full day and I also need a situation where I can phone in and say,'I just can't get into work today. I don't feel up to it and if I force myself today it will have repercussions and you probably won't see me for the next week because I'll need even longer to recover.'

I'm sick of feeling apologetic and always having to explain or excuse myself.

So who has a life that is more 'unfortunate', more limited ? Who is more able, who should have more determination to get out there and contribute instead of taking advantage of State handouts ? It's certainly not a competition and there's no point in trying to determine who is worst off and who deserves a sympathy vote. In fact it's impossible and pointless to judge because any kind of impairment, illness or disability will be subject to permutation, variability and by the character of the person it inhabits. There is no black and white.

What there is, as in so many aspects of life, are many shades of grey and a desperate need for recognition of the fact that most people who receive a State Benefit because of illness or disability, do so reluctantly and with a degree of apology and embarrassment. They would dearly love to earn that money and offer something in return when they can ...and that is the point ---when they can.

However, in order for them to do so, there has to be a much deeper level of understanding of people's fallibility in the face of chronic illness, a knowledge that life with e.g. M.E. can feel very fragile and insecure and that, if there is any hope for the likes of us (PWME) returning to the working world and contributing our undoubted skills, employers and their other employees have to understand that chronic illness deserves as much respect as disability.

That's NICE

Some of you M.E. Peeps may have heard that the One Click Group is taking NICE to court over the latest guidelines about M.E./CFS.

Recently, Ann Robinson (no, not that one with the ginger hair and curled lip) wrote an article in The Guardian: Sick, mad or bad? saying that she cannot she what is wrong with the guidelines which suggest that CBT and GET (Graded Exercise Therapy) will be beneficial to PWME.

What's wrong with that idea is that CBT is a method through which one is supposed to be able to retrain the thought processes behind certain activity. It is used in a variety of contexts and with people with a variety of conditions.

Now, CBT may be useful in the sense that, for those who are having difficulty in adjusting to a restricted existence, they may gain insight into ways in which they might adjust to their plight. However, having been offered and accepted my GP's kind offer of CBT 5 years ago, I found that the therapist put great emphasis on ways in which she thought I could retrain my thinking processes to overcome my fatigue, pain, disorientation and muddled thinking. Now, if those aspects of myself had been psychologically based ---e.g. if I was clinically depressed and, as a result, the body was willing but the spirit weak, and I therefore found everything just too much effort, this may have worked. What she failed to understand was that I was not depressed and that the spirit was all too willing to get up and get on with whatever I desired but my body was weak and unwilling to let me. That's why PWME are so cross and agitated and frustrated about the idea that CBT can help them.

Similarly, the notion of GET is based around the fact that one is kind of 'out of condition' and if one can only motivate oneself (which again implies the idea that the problem is in the mind) to get up and get out, incrementally increasing the amount of activity, then one will eventually reach a state of nirvana where the idea of doing the London Marathon is all tickety boo.

Once again, when muggins was very, very poorly 6 years ago, muggins was persuaded to try this 'therapy' by my GP. Silly really ---I should have known better and my body was telling me to listen to it but no, I thought the GP must know better. He's such a nice man and so quietly spoken. He means well. He means well but he so deluded. I'm sure that my months of trying to walk further, walk faster made matters worse. This outcome is not unusual and GET has been shown to make people with M.E. worse --- not just in the short term but in the long term and sometimes permanently.

So, Ann Robinson, that is what is wrong with the Guidelines --- they are balderdash and not only that but they perpetuate the notion that
a) if only PWME would get up off their fat arses and TRY and
b) get over the prejudice about 'therapies' and the nuanced implication that they (PWME) are, in some way, mentally ill,
then they would get better and could go back to work.

This doesn’t help anybody and if you look at the Ann Robinson article via the link above and the message board that links to it you will read the most astonishing tripe and bigoted nonsense about PWME from all sorts of people. Thankfully, dear NMJ has put the point of view of PWME forcefully and told these twits a few home truths.

And another thing whilst talking of bigots and being misunderstood......

The proposed reform of Incapacity Benefits will most likely make people like me feel even more judged, intimidated and harassed than we do already. Only last year I was repeatedly asked to go for a Personal Capability Assessment at my local DWP office. I can only reach this town (11 miles away) on my very best day (few and far between and what any normal person would judge to be a 'sofa day')and this request was during the summer holidays when things are at their most hectic and I struggle every day.

I refused and refused until, in the end, my GP sent a letter and miraculously I received a phone call from the DWP telling me that I need not go and they would not contact me again for 3 years. They had not understood my condition or contacted the GP first and they had not understood the strain their type of persistence puts upon people who are already struggling to exist.

Last week, my friend who lives opposite was asked to attend the same office for a PCA. He is the same age as me, ( not that old) ,has a chronic heart condition, has recently become profoundly deaf and cannot walk further than abut 10 metres (with the aid of a stick) without being breathless and having to sit down. In all honesty he probably has about 5 years of life left if he's lucky. His own GP and Consultant have told him so and whilst he tries to adjust to this fact he is harassed to go for the PCA. In fact when he got there, the assessing doctor spent no more than 3 minutes with him and said it was ridiculous to even think about him working.... Yet still the pen pushers at DWP made him go.

The new assessment that comes with the reforms next October will, apparently, assess you for what you can do rather than what you cannot do. For example:
Can I use a keyboard and answer the phone and take a message ?
Yes I can do both.
Can I walk more than 30 metres?
Yes sometimes.

What none of these assessments ever seem to assess is how often, how regularly and consistently you can do any of these things ---particularly when you have a condition like ME/CFS, which fluctuates, day to day, minute to minute. They never take into account that inorder to do quite ordinary things like go to the Co-Op in the car two miles away, buy a loaf of bread and come back might entail a slow and steady preparation and a over an hour's rest afterwards. They also never seem to think about the notion of returning to work within the context of a life rather than as an activity in itself.

For example, on a good day I might manage to work for a morning (desk bound/sitting down sort of job) but which morning that is can vary. Presumably an employer would wish me to specify which morning I would show up for work but I never know from one day to the next how ill I'll feel ---so who will want someone who can be so unreliable /

If I was assessed as being able to return to work (even on a part-time basis) on the basis of my ability to use a keyboard and answer the phone, and that was all I had to do then I might be able to return to work but that doesn't take into account the actaul businees of working within the context of my life. There is still a house to run, children to care for, shopping to be done etc etc. It's the everyday existence stuff that takes whatever energy and wit I have. Holding that together is more than enough without adding to it by going out to ork as well. I cannot do it all. And what’s the betting that if I did return to work and into a job supplied by the DWP (so that they could tick a box and make their figures look good) that it would be a dead end job completely alien to my experience and expertise?


In the end, my suspicion is that a lot of this is down to money, politics and big business. It suits both the Government and the Insurance industry, who are in sway to each other, to uphold the Psychiatric Lobby who insist that M.E/ CFS is psychological rather than neurological. If it's psychological it's fixable by drugs or therapy, wizardry and mind bending and then we can all go back to work and save the Government and the Insurance the bother of paying out for what is due to us: us, who paid our taxes and contributions, who set up insurance plans and paid our premiums, who often went on working trying to pretend everything was all right when it wasn't and wanted and want desperately to be well and get back to a normal fulfilling life where we're not dependent and spending our time defending ourselves. The savings the Government and Insurance Industry think they might make would be better spent of proper Biomedical research and care instead of money making and ego building