It was a Thursday evening like any other. I was eating a meal and flipping through a publication that I'm not a fan of, but as it lay idle on my parents' table, I thought I'd treat myself.
It was around this time my phone and mail alerts started pinging like an oven timer on a turbulent episode of MasterChef. The Sun columnist, Rod Liddle, had decided to invidiously write an article that epitomises lazy & gutter journalism.
In a piece entitled: 'Pretend disabled' really ARE sick' - Mr Liddle decided to knock the work shy, but does so by taking aim at an array of disabilities and afflictions. He says:
"My New Year's resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of bad back or one of those newly invented illnesses which makes you a bit peaky for decades - fibromyalgia, or M.E."
As a M.E/Fibro sufferer for over 20 years, I guess my 'decade' of feeling peaky has long overrun its course.
Having received my diagnosis in the early '80s, even then I shouted: "No, don't give me the joke illness..." and that has stuck ever since. M.E and Fibro sufferers tend to become incredibly introverted over their illness due to perceptions. We are the Skoda of medical conditions.
In recent times, you'd have expected the stigma to rescind. The tragic tale of Lynn Gilderdale - the girl who requested her mother, Kay, to end her suffering - brought much attention to M.E and the affliction's devastating effects. In fact, Esther Rantzen summed the illness up; when speaking of her own daughter's battle, she has purportedly said: "M.E is a living death."
A good friend on mine, Leanne - upon seeing Mr Rod Liddle's comments said to me:
"Living with Fibromyalgia is something no-one can really understand unless they've gone through it. As well as the horrendous physical symptoms of 24/7 pain, exhaustion, insomnia etc; and taking 25 plus tablets a day, you have to deal with the guilt that it affects everyone who cares about you. I'd be ecstatic to feel 'a bit peaky!'"
- I echo Leanne's sentiment. Those who do suffer - and have loved ones that suffer alongside them - are not too sure where the stigma comes from, but it is tangible. Personally speaking, I have seen the ugly side of humanity on so many occasions that I took to lying about my illness; it's easier to appear rude than it is to admit you're ill with the joke condition:
"I can't come out, I've got to fly to Zurich"
"I'm sorry I can't come to your birthday drinks, I'm babysitting a Rhino"
Somehow, elaborate excuses are genuinely easier for people to believe than; "I have M.E and am probably going to be in a heap on the floor within two hours time. I shall have a hot-water-bottle on my neck - even in the height of summer, and I will need to be left alone so I don't have to speak which will exhaust me. Tomorrow, the knock on effect will mean I will slur my words and will generally be incoherent to anyone who doesn't know me. I may be like this for a few days/weeks/months, so just count me out, but please don't stop inviting me as I don't want to miss out on life, honest!" - No, it is indeed easier to make up other excuses.
For years, I fully kept it a secret and hid from the world's speculative gaze. or someone that was considered very social, this was hard for my family to watch. They knew I would fight to my last breath, but the world would never fail to steal the wind from your sails. A recent piece by Dr Llewellyn King, spokesman for the M.E Association, detailed the lack of understanding of the illness, and beautifully conveys the extra turmoil that society projects.
Now, Mr Liddle's opinion piece was only intended to be inflammatory for the sake of provocation, and I'm blissfully aware that I play into his moribund hands by commenting. The devout '80s tactic of causing a fuss simply to get a reaction is something that is thankfully on the wane, and I have heard a lot worse in day to day life than that of what Mr Liddle has said. But, given I received such a weight of mail in anguish, I guess the harden callus that I have to such ignorant comments is something yet to be formed on the new and vulnerable suffers -- not to mention their loved ones. The health of those that suffer do not need added extras of reading maligned and flippant comments.
This, however, is not oversensitivity; when Ricky Gervais or Steve Coogan made jokes about M.E, it had a punchline. And therein lies the kicker; if you're going to say something about a sensitive and vulnerable demographic, make it funny.
Rod Liddle's column was specifically aimed at the 'pretend disabled' who 'sponge' off the state, but, to succinctly address: M.E and Fibro are what is known as fluctuating illnesses. There is no consistency to health or life. There may be weeks on end where one is bed ridden, then there may be a few days of life that can be wrung out of sodden body. This doesn't make for a great employee. It is both untenable and unfair on any would be employer to take on such non conformity. Of course, this also adds to the pressures of a sufferer's life. You are not looked upon as 'disabled' in the modern day perspective of the word, and yet, we're clearly not able-bodied. With the world ever needing a label to fully pigeonhole - I guess M.E/Fibro patients fall between the cracks.
About the last option left is that of self employment or to go freelance. Of course, this is easier said than done. Freelance areas are saturated, and ironically, taken up by the likes of Mr Liddle. I, like many hundreds of of M.E and Fibro sufferers, have exhausted every avenue to find tailored and suited work. There is little help, and once more, this is a separate and vast subject unto itself.
To conclude - do I wish Rod Liddle to feel a very real brand of hell, personal torment; a symphony of agony on a day to day basis? Oddly enough, no. It's easy to wish that, but the best part of living with a life changing illness is that you glean a healthy perspective, and life becomes an experience that is encumbered in the positive for the sake of wellness.
Like most M.E/Fibro sufferers, I am overtly susceptible to negativity, so it is hastily lanced from my life like an infected boil. Take that as you will, Mr Liddle - and as you giggle at the bar over your latest storm, I shall have to take my leave of absence to rest; funny that. The final irony is: M.E/Fibro sufferers tend to be dedicated individuals who have pushed themselves to the limits of human endurance. Athletes, academics, and life's overachievers. And yet, we're labelled as lazy. So, the point is, with tongue firmly in cheek - if you haven't got M.E/Firbo, then you've simply not tried hard enough.
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