23rd November 2012 : a special day and a special anniversary

Today is the 23rd November.

For some reason, this date has featured more than most in my life.

23rd November was the day my Grandmother was buried

More recently 23rd November was the day my dear dog died last year

23rd November was the day I heard that my Benefits would stop because I had been found fit to work and would have to Appeal or find a way of earning a living.

Probably the most life-changing 23rd November was 40 years ago: it was the day that I caught a virus that would change my life completely

You can read the full story here

I was finally diagnosed with M.E. eleven years ago. Almost immediately I was awarded Incapacity Benefit. That financial safety net gave me some comfort and allowed me to put some of my worries aside so that I could concentrate on my diagnosis and how to deal with the news (one of the reasons I had tried and tried to stay at work was because I was afraid of what would happen to our family if my salary disappeared). If you know me or follow this blog, you'll know that my entitlement to Incapacity Benefit ended last November (23rd). My entitlement to any health/disability related Benefits ended in August. The process of being assessed has been cruel and very damaging. The damage is more to my soul and sense of self than financial.

Before diagnosis I had already lived with M.E for 30 years and been completely disbelieved or ridiculed. After diagnosis I felt somehow validated, justified...despite the huge mess we call  'treatment' for people with M.E. in the U.K. The more recent process of assessment means that the severity of my incapacity has been  disbelieved and questioned once more and I feel my integrity and honesty has been questioned. I cannot begin to describe how hollow that makes me feel.

So, on this special anniversary, what do I see when I look back forty years ? What has changed for people with M.E. ?

For people in the U.K., I would say 'very little' (and this is me being polite). When I first became ill in 1972, my parents (worried to death and wondering how I had changed so dramatically and quickly) were told

'It's just a virus of some sort. We don't know what it is. Just go away and wait for it to burn itself out.' 

It's still smouldering.  

As time went on and I had all the classic symptoms of fevers, sore throats, aching joints, sleep disturbance, inability to concentrate, digestive issues, cognitive issues and later (reactive)depression the last symptom became the ideal candidate on which to focus.

'Depression' is an easy 'get out' for doctors. There are pills. Supposedly, you take them, in the right quantities, and the depression goes away or eases ---- if you are depressed. Except I wasn't: or at any rate depression was my central malady. There are talking therapies. You talk, they listen and help you to understand your situation. I talked. They heard. They didn't listen. Because I wasn't saying whaty they wanted me to say and they weren't hearing want they wanted to hear.

Many people who are diagnosed with M.E. have had symptoms for a long long time (not usually as long as 30 years -- as in my case) but, still, they have suffered and been misdiagnosed for too long. The problem is that diagnosis of M.E. is, in the U.K., still a diagnosis by exclusion: meaning that the GP tests you for everything else that might be wrong with you and when all the tests come back 'normal' they shrug, try to think of an appropriate label, and usually choose Chronic Fatigue Syndrome (CFS).

CFS (if it exists at all) is not the same as M.E. Lots of people feel tired all the time for all sorts of reasons (emotional and physical). They may feel fatigued too (tired and fatigued are not the same) but not the sort of life-sucking fatigue that people with M.E. experience. M.E. is often not a term GPs like to use....and so the medical profession and many patients have sort of colluded in a compromise where the two conditions are conflated, mixed up, and we are told we have 'M.E./CFS'.  In the U.K. the NICE guidelines recommend a combination of CBT (cognitive behavioural therapy) and GET (graded exercise therapy) and this combination of 'treatments' has been created and promoted by what is known as the Wessley School: a group of psychiatrists centred around Simon Wessley who believes that people with M.E. can be helped by a talking therapy and exercise (which has been demonstrated by others to be damaging to people with M.E.)

The crux of the matter is that Wessley and his acolytes have the Government and the insurance industry in their thrall and influence. It suits the Government and the insurance industry to take this view of M.E. for no end of financial and political reasons. So, at least in the U.K., nothing much has changed for the person with M.E. in the past 40 years: there is still no test, no proper, funded bio-medical research, no proper understanding from the general public ('Oh I get ever so tired too, sometimes'), no proper understanding from GPs or training for them and no support for people with M.E. who are terribly ill, disabled and sometimes dying. Scandal after scandal has occurred and nobody seems to really care.

From a more personal perspective, my experience of living with M.E. for forty years has led me to become extremely distrustful of the medical profession. I am sceptical about their intent, their ego, their willingness to listen to alternative points of view, their willingness to really engage with a patient and their ability to look at the whole picture rather than treating each individual as a symptom or collection of symptoms, each contained in its own box. This opinion of the medical profession has been borne out by their treatment of other family members who have had similar experience to myself. Of course, not all doctors are the same and without modern medicine my son's life would be dramatically different and worse but the difficulty for people with M.E. comes about because of all the argument and flimflam around the nature of that condition and all the vested interests surrounding the debate. Once it was finally confirmed in 2006 that I had had M.E. since 1972, all the difficulties I had had, all the struggle, all the doubts about my own ability and strength were explained but I had been misdiagnosed for over 30 years by then and so, in pushing on,  I had done untold damage to my physical health in pushing through and due to the insulting and condescending treatment by doctors and other people in my life suffered all sorts of emotional damage too.

The last 11 years of my life have been wasted (from a purely personal point of view) . I have lost my career, friends, countless opportunities to work, travel, enjoy life. The saving grace is that I have children and they are a shining light in a dull and harnessed, tarnished life.

What of the next 40 years ? I doubt that I shall live that long. If I do I shall be very old and, in all honesty, I don't want to live to a great age.  I hope that there will be a dramatic turnaround in attitudes to M.E.: greater understanding and more proper medical research so that we can have definitive tests which lead to better treatment and less mistreatment of sufferers.  If this does happen in the next 15 years or so, there is the faintest possibility that I might have some useful and productive years ahead of me before I become old and more frail.

This all sounds very dour and negative. So what has the past 40 years, and especially the past 11 years taught me ? 

When I was first diagnosed and terribly ill, scared to death and hopeless, I had a brief telephone conversation with my homeopath: an elderly, caring and very worldly man. He said 'You will never get better if you don't learn to sit and watch the day'. I had no idea what he meant.

Because I had been disbelieved about being unwell for so long I had developed a way of being based upon trying --- harder and harder: trying to push against my feelings of illness and lack of energy, pushing against the feelings of 'I can't', pushing against the feelings and scoldings of  'you're just weak and lazy' towards an attitude of 'I'll show you'.  It took me years to let go of that way of being and relax. And then one day Reg's words made sense: I just had to try and stop trying and relax into what was around me, be in the moment. Reg has gone to a 'better place' now. He helped so many people with his homeopathy during his time here but helped me more with his sage advice. 

I suppose being ill and being disbelieved for so long has also given me a sense of sympathy and empathy with the underdog and the outsider. In truth, that is my way in any case, and one of the regrets and sadnesses I have to sit with every day is being unable to do as much as I used to do in order to help, assist and advocate for people who are vulnerable. Since being really ill, house or bedbound, I feel that I have still not found a way to be useful and it riles me every day.

What would make me feel better about all this ? What would help me to heal emotionally if not physically ? 

I suppose all I want is acknowledgement from the medical profession and from the DWP that I am and have been as unwell as I say I am: that I cannot keep up with people with a normal level of health and that I have tried my damnedest to make the best of what I have. I feel heard and listened to by the people who matter in my life: partner, friends etc. but unheard by the people who hold the power. I feel disenfranchised and disempowered: stuck in an endless loop of having to justify my actions, or lack of them, and justifying my existence. 

As a society we need to acknowledge that disabled and chronically ill people may be more than willing, even desperate to contribute to society ...by paid or voluntary work or others means...but access to that platform, those opportunities, has to be made easier. At the moment all we have is a series of endless barriers, platitudes and spin and a Government who uses all sorts of measures to create a 'Have and Have-Not society' where the Have-Nots (whether that is not having money or a job or good health) are blamed and shamed, pariahs to be looked down upon. Instead of having one society, one supportive community there has been the creation and perpetuation of two tribes pitted against each other whilst the those in power look on and assist the wealthy.


23rd November 2012 is an anniversary but there can be no celebration.