The most unkindest cut of all

Anyone involved in any of the chronic illness communities on the internet will I’m sure have seen the controversy surrounding the 60 Minute segment of CBS news which aired on 6^th October 2013 in America. The topic was disability. 

Commenting on the severely overstretched disability benefit system in the country, Senator Tom Coburn (a qualified physician) commented that twenty five percent of the files he reviewed at random should never have been granted disability payments, and another twenty percent were “highly questionable”.

Comments were passed on the rising prevalence of disability lawyers, with eighty percent of claimers now having legal representation compared to the twenty percent represented in 1971.

Lawyers Jessica White and Jenna Flizsar were then interviewed about the new onrush of cases flooding the Courts, and the sticking point for many ill viewers came when one of them flippantly declared that many of the cases were for conditions with “subjective symptoms like backache, depression and fibromyalgia.”

Let’s look at that for a second:

Subjective: based on or influenced by personal feelings, tastes and opinions.

So, what they actually came perilously close to saying is that the symptoms are all in sufferers heads based on their “personal feelings”.

(Food for thought. Image from izquotes.com)

Well gosh; we spoonies have certainly never heard that one before. Oh, wait….

Jenna Flizsar (notably not a physician or doctor of any kind) then went on to comment that there is “really no diagnostic testing for it [fibromyalgia]”. The correspondent Steve Kroft stated that it was therefore “hard to deny you’ve got it” and she replied “Correct”.

I’ll start very slowly shall I, for the benefit of their ignorance?

If you bothered to do any research at all - and the fact that you’re a practicing lawyer in the field and you clearly haven’t done should not fill your clients with any confidence in your professional competency – you would find that there is a very real diagnostic for Fibromyalgia. There is no one specific test, granted, but since when has lack of that meant that nothing is wrong?

Diagnostic criteria were set down by the American College of Rheumatology in 1990, introducing the inclusion of pain in all four quadrants of the body (both sides, above and below the waist) lasting for longer than three months combined with the presence of at least eleven of eighteen “tender points” – specific points on the body which cause pain when gentle pressure is applied. Diagnosis of fibromyalgia is often differential – if specific tests have ruled out conditions it can be considered to mimic (most notably arthritis and lupus) then these criteria are to be applied.

So not only are you incorrect, you’re a staggering twenty three years behind the times.

It’s not only recognised in America either. The International Classification of Diseases (ICD-10) compiled by the World Health Organisation firmly classifies Fibromyalgia as a diagnosable disease under the category “Disease of the musculoskeletal system and connective tissue” and the European League Against Rheumatism recognises it as a neurobiological disorder. I could go on, but I won’t.

What angers me most is that Fibromyalgia is estimated to affect 1 in 20 people worldwide. That’s a heck of a lot of people (roughly 0.35 billion, in fact) to be casually dismissed in a high profile manner as either conjuring their problems in their head or indeed using these “conjurations” to flout the system.

Comments about backache really make me despair as well. Not only did I suffer with it myself for years after a particularly nasty fall from a horse (the horse fell and I was pretty lucky not to end up underneath her), but I’ve watched my Dad battle with it on and off for most of my life. When I was a little girl he had a trapped nerve which took nearly two years of physical therapy to release, and then more recently suffered with locked muscles around an undetected joint injury. He walked bent over to one side for nearly eighteen months and sees an osteopath to this day. Both times he really should have stopped working but as a self employed bricklayer couldn’t afford to, and besides which he’s far too stubborn for his own good (I simply can’t imagine where I get it from). My Mum suffers with trapped nerves intermittently with accompanying sciatica too, but she never stops going to work either. My point isn't to criticise those who do cease work because of back injuries - what I wanted to illustrate was that in both cases they were advised that they *should* do so.

(Not fun, and yet another example of something which can't be seen being dismissed out of hand. Image from jhenteopengco.blogspot.com)

Not all people with backache are lazy or making it up and it’s highly insulting to assume so. 

Dismissal like this is why so many awareness blogs, websites and communities exist. I’m newly a member of the Fibro Bloggers Directory and there are 83 of us in just that one list. Over on FibroModem’s FCK Directory (of which I’m also a new and excited member!) there are even more. That’s just ONE condition.

Googling the term “chronic illness blogs” yields over two million results. Not all of those will be blogs, but a lot of them will be.

We can’t all be wrong.

Putting the righteous anger back in her box and wishing you all many spoons xxx