#myalgic

Unraveling the Hidden Struggle: Understanding Myalgic Encephalomyelitis and Its Common Misdiagnoses Continue reading Common Symptoms of ME That Are Easy to Overlook

Statistics.

There are estimated to be between 39.4 and 40.1 million people of working age in the UK(1).

Approximately 6.9 million people of working age have a long-term condition(2).

Approximately 2.2 – 2.5 million working-age people are in receipt of an out-of-work benefit due to the seriousness and impact of their chronic illness and/or disability(3) although this may not reflect the true number effected as some people will be in a position of not making a claim.

4 out of 5 people acquire their disablility during their working lives, people from all walks of life, chronic illness and disability does not discriminate with the risks increasing depending on occupation and lifestyle(4)

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I was diagnosed with Myalgic Encephalomyelitis (“M.E.”) in 2002 after falling ill in 2001. After 8 years service and burning the candle at both ends, a mixture of work and play, it was clear to me that my condition meant I was a drain on the company, in fact it had been pointed out to me when I was made redundant. I worked on a ‘recovery’ to the point I had a brief period of remission and from 2005 I managed to hold down a full time job back in the City before becoming too ill to work again in 2010.

It is worth noting that the long-term conditions covered by the Quality and Outcomes Framework do not include most of the 324 named neurological disorders(5) of which it is estimated that 8 million(6) people are living with in the UK, conditions such M.E. which is a debilitating and complex disorder that effects all body systems.

And so today I am yet again a number used in various statistics by the DWP, NHS even the news media when they want to stir up misguided emotions about feckless layabouts, scroungers and my ‘new-age’ illness. I don’t want to dwell on the last five years of hatred and the undoing of the disability civil rights movement of the 1990’s by this current crop of vengeful politicians, however I would like to make a simple point that has either been lost in the last 5+ years of trashing the sick and/or disabled or they are in denial of lived reality during the politicians ‘moral mission’ and it is this, balancing the needs of the employee and the demands for performance by the employer.

Now, my illness is invisible therefore it does not fit the social construct of what a disability is or should be but nether the less I have a disability as defined under the Equality Act 2010. I know of many disabled people who are able to give able bodied people a run for their money in the corporate landscape. However, not all disabilities are equal, even the same disability will effect another person differently. Many people, like myself, have a disability that is invisible, neurological and that fluctuates, and like me, whist it effects mobility it also effects multiple systems including cognitive function. Most people affected by chronic illness experience both time and mobility limitations in their abilities to perform on a day to day basis. Like me this means some days I can do marginally more than others but on those days where I push myself, always with out fail, it leads to what is called post-exertional malaise. Simple tasks such as taking a shower, attempting to keep my surrounding clean and tidy or keeping the garden under control takes its toll. In other words following mundane domestic activities I crash from both physical and mental exhaustion and I am at best completely house bound recovering on the sofa and at worst bed bound for days, even weeks on end and in constant pain even when medicated with prescription painkillers. And let me be absolutely clear, I thought I knew what exhaustion was when I was well, I was able to run marathon distances, sail around Europe with only a couple of hours broken sleep a week at a time. This is very different and very debilitating.

Back to my main point, both employee and employer have needs that must be met, employers have products and services to deliver to its customers, it has regulatory requirements to meet, profits to deliver to its stakeholders and investors and a duty to the rest of its workforce. An employer needs above all else stability and certainty in order to plan for the future.

My disability means I have needs, needs that go above and beyond the requirements of your average employee. Work is always going to be incredibly difficult for me. I can not guarantee how many hours per day I can offer an employer let alone in a given week, month or year. In fact I know that whilst on one day I will be able to make it to a place of work I can guarantee that I will crash and be comatose for the remainder of that day and will continue to be for many days that follow requiring private transport back home followed by complete bed rest due to both physical and mental exhaustion. I am unreliable and I will need long term management and exemptions requiring others either picking up my slack or twiddling their thumbs waiting for me. The question is to what degree should a company be expected to facilitate the specific needs of people suffering long term chronic illness, its environment and objectives?

Whilst I have 20+ years experience in managing procurements & projects I am a liability, a risky hire, and a drain to any employer. This isn’t about the employer taking practical steps, making adjustments, creating a work/life balance or allowing for flexible hours or a work station from home; this is about people like me with fluctuating chronic health conditions that can not give a guarantee of any sort either in the short term or the long term to an employer to work a few hours in a given week.

Iain Duncan Smith says people who are capable of “some work” should be expected to work and that escaping a lifetime on benefits is ‘compassionate’(7), even likening the sick and/or disabled to slaves(8) and to this end Iain Duncan Smith accelerated the rollout of the Work Capability Assessment (“WCA”) ignoring the results of the pilots and any impact assessments, the end result has put me and everyone like me through the WCA to see if we are capable of picking up an empty box or taking a shit without help and basing our employability on that basis, sometime finding people in a coma or even recently diseased fit for work.

I would love to be back at work, it is difficult being defined by my illness and not by my status in society through my occupation or who I work for as I once was. I don’t enjoy having to find a way to live from a 90% drop on what I once earned and being ill has many additional costs. However, companies are not charities, they are not there for the good of society or to pick up the obligations of the state, they are there to make profits. Just as politicians and the wider public see me and others like me as a drain to society, unfortunately so does any employer. In fact I have had several businesses already turn me down flat when I have been approached by them and after explaining my situation even when offering my services on a freelance ad-hoc basis so as to reduce their financial burden and risk.

So where does that leave me and the estimated 2.2 - 2.5 million other people publicised as a drain to society? It is clear that harm caused to us is seen as little more than collateral damage in this ‘moral’ pursuit to save us from ‘slavery’, if only they could release me from the bonds of my incurable neurological disease.

Well I'm unsure on how to start this blog but we may as well begin with an introduction to those few whom may read it.

My name is Russell, I'm a 25 year old M.E sufferer from England.

I've had this illness since I was eight years old, Which makes it seventeen years since I was diagnosed with this demoralising illness.

Little more is known today about the cause of M.E, than when I was a child, However knowledge of its existence has grown, albeit while understanding has not.