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"
Or:
"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.
Follow Jason Reed on Twitter: www.twitter.com/jasontron
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I have Fibromyalgia and have suffered relentless pain, insomnia, fatigue for the last 7 years since an RTA, I have grieved the loss of my job and my sporting activities which were my sense of purpose in life.
My response to Mr Liddle’s comment? “I hope you do get your wish Mr Liddle, to develop Fibromyalgia ‘to claim benefit,’ because it couldn’t happen to a nicer guy!”
Mr Liddle falls into the category of the ‘Jim Davidson’ era (and look what happened to him). Give Frankie Boyle an extra spot, no stranger to controversy, but a far superior comedian/ writer and makes me laugh!
Mr Liddle makes cheap shots at most of society. On the 5th of May 2005, Mr Liddle was arrested for common assault against Monckton, his now wife, who was 20 weeks pregnant at the time. He admitted the offence and accepted a police caution, but said later that he only did so because it was the quickest way for him to be released, and that he had not assaulted her.
On valentines he tells his wife to “Resume the position,’ I’m guessing that’s either with her eyes shut imagining Johnny Depp, or with her back to him whilst reading a Jackie Collins novel.
Just like a baby cannot control its bowel and stop itself from defecating into its nappy, Mr Liddle cannot control himself from defecating over his column page.
Many thanks for the nice comments.
I fully agree with all you say, I applaud it so. I am passionate about addressing the areas you've highlighted.
As you've outlined, their clearly is a great many people with fluctuating illnesses that are eligible for tailored work, but our current systems just do not cater for this. The response I've had to this article has been overwhelming, and I hope to utilise this and take things further. You're right that the political world needs to understand this problem before we can evoke a change. For too long this issue has just not been addressed. Many thanks again.
I replied:
I add James Delingpole to my list of "Nasty pieces of work", so named because it aptly describes both person and the material they write about people who have M.E. Others include, Victor Lewis-Smith, Ricky Gervais and Rod Liddle, on the back of whose efforts, yesterday, he has grubbed a few more quid with this diatribe (The fake disabled are crippling our economy, Daily Telegraph, 26 January 2012) and had the opportunity to infect your readership with a prejudicial view that will go unchallenged unless you allow a fair right of reply.
If James is too busy, fortunately for him in the rudest of health, moving on to his next target, to accept the invitation which I extend to him to come and visit a few people who really do have M.E. (Myalgic Encephalomyelitis) to see whether they are, in Rod Liddle's words just a "bit peaky" and, I hope, remove the unwarranted "fake" slur from people whose lives have been devastated by a dreadfully disabling neurological illness, perhaps you would send an independent journalist and give them the same space and prominence, as James has had, to tell it as it really is.
James may be, "right about everything," by one interpretation of the phrase. This is, however, one subject about which is he quite incorrect and is, unfortunately, misleading your readers. I hope you will put matters right, preferably in the way I suggest.
Thank you further for bringing my attention to Mr Delingpole's article. I shall politely address it in my next piece. I've read some of the comments on the article in question, and they are quite concerning in themselves.
I hope you have a nice rest to your week, I know M.E can be hell sometimes!
Daisy
Well done for your work in this area, as you'll know, raising awareness to the very real plight of these illnesses is arduous to say the least.
As a fellow sufferer (M.E. 12 years, Fibro 4) i too have adopted the 'think positive' approach to life and try to ignore anything negative, i simply don't have the energy to waste on it, so thank-you for the last few minutes i spent reading this :)
I pretty much agree with all of this, have done those things and know how you feel....i hope you don't mind if i borrow the 'babysitting a rhino' excuse, i don't think i've used that one yet, fabulous!
The only thing i must point out which pops up & niggles me occassionally is the reference to Mrs Rantzen, i personally believe she has not helped our cause over-all because she praised that charlatan Parker & his money-making LP con all over the media and then later admitted much more quietly that it had not really helped her daughter that much after all.....and then more recently reported that her daughter did not infact have M.E. at all, it was/has been Coeliac Disease all along.
Other than that 'high five' , keep fighting, and i hope you are having a 'good' day.
Claire x
I had heard about the Lightning Process - it was one of those "look, you have to try this, it'll cure you..." type situations that we're all more than familiar with. Ever with a keen eye, I looked into it. I was less than impressed also. I certainly wasn't aware that it was Coeliac Disease that was causing Mrs Rantzen's symptoms. Many thanks for pointing this out.
Wishing you well, and hope your 12 year stint will soon come to an abrupt end!
I am glad that I had missed the original article, absolutely disgusting and vial comments by Liddle. I would very much like to meet this man in person so that I can demostraight the pain my partner is in everyday with her fibro, starting with his spine. This REALLY gets my back up.
Hope you are doing well Jason.
many thanks for the comment. You convey the anguish of a loved one who suffers alongside their partner well. This is often to overlooked part of the illness. Your life is no doubt hugely impacted by your this.
Wishing you and your partner all my best! Hope you are having a good run at the moment.
Fully agree AndrejNkv - Leanne, the friend that I quoted in this article, also said pretty much the same as you. We're not quite sure where the one upmanship of illness comes from. Sure, there are some horrific illnesses and disabilities to contend with, but it's a very crude assessment to start a 'top trump' type affair. Suffering is suffering, and to work towards less of it is the most prudent of measures.
Still I'm pretty sure that I could find the energy to kick Mr Liddle into the middle of next week for this sort of trash journalism that belittles people. Or actually I'd like him to walk a few miles in my shoes and see if he still thinks that fatigue, migraines that leave me in tears or constant joint pain that takes a whole pile of pain relief to just get me to function make me lazy.
One thing I encounter with other sufferers is watching TV, tweeting, facebook etc, its surprising how much this takes out of you. If you do any of these, suggest braking it down to 15/ 20 mins every hour sometimes even less. Moving images, reading all kick the brain in toaction. Try going in to a dark room, switch everything off and just resting (eyes closed) for 30 minutes a day. Try to go for a walk each day, whether it be 5 minutes or 30 minutes.
If you see an improvement, gradually build up each thing but keeping the 30 minute rest.
Thank you very much for the reply. As you can imagine, with over 20 years of illness under my belt, I too have tried everything. You're right though, facebook, television, etc.. really do take it out of you. I personally avoid social media, mostly, for the very reasons your outline. That said, it's an oblique situation: many M.E/Fibro sufferers are housebound, so the interaction of online socialising is often a lifeline. To balance this is the key, and that's of course reliant on each individual.
You also mention walking. Indeed, I am a great fan of walking. Trouble is, the cynical do tend to highlight this area. When you're having a good day, and you want a stroll to get some air and see the world for a change, you're only one step away from someone crowing "look, you can walk fine, there's nothing wrong with you" - which is always nice. The pre and post walk routine is arduous, and something that the (excuse my term) layman doesn't quite understand.
Thank you for the good comments!
I'm so sorry to hear of your illness and how it's effects on your life. I'm glad you've pointed out how it's cost you opportunities in your professional life. This is an area that's not projected. It's good to hear you have a good boss, this is invaluable.
I can only begin to imagine what it's like to deal with Fibro and kids. The frustration of feeling you're missing out, surely, compounds the problem and places extra stress upon you. Another dimension of turmoil no doubt.
I truly wish you my best, Deryck!