This is a personal blog from Celeb FC Founder – Karin – after reading article after article on Lady Gaga & her recent revelation of suffering from Fibromyalgia and the upcoming video documentary “Five Foot Two”.
Firstly, let me get my “politics” out of the way….It’s a sad indictment of our times that people are suffering with this condition (& I mean really suffering) in the #UK yet are being vilified for being “lazy” / “shirkers” etc thanks to the political climate at the moment… Just a diagnosis of a condition does not entitle you to support. Now you have to go into a room with people youve never met, who don’t know you & who disregard Dr’s notes / Treatments etc & PROVE you are sick.
The Celeb FC Teammum & Founder has this condition but – like many in the UK – Does not get support that “Visible” illnesses get, and what sufferers in the UK do get has to be fought for, long & hard, despite many spoonies having worked their whole life until the Fibro menace hit!
NO in the UK, Fibromyalgia is NOT recognised in many Medical & DWP arenas despite the gov website protestations to the contrary… So I firstly want to say, whilst Fibromyalgia is awful, The way sufferers are treated is worse!
Now, after Lady Gaga’s revelation, It’s a terrible shame that just a quick flick through SocialMedia will find many (quite rightly) sympathising with the fabulous Lady Gaga BUT there are also those who have started to ask questions – “How can she be ill if shes touring & dancing & acting & singing etc…..
Which is the exact opposite of what I believe she is trying to achieve with this revelation…
There’s none so critical as those that don’t understand & especially those that don’t want to understand as the illness is not “in your face” apparent….
With the fight many of us Spoonies have (just search the blogoshpere for related blogs & articles from people who have the condition), just to have the pain we feel, recognised, I am a little worried that maybe someone of Gaga’s status & prowess is not quite the right “fit” for a face of this despicable illness. And that isn’t her fault.. I believe its just another facet of the terrible condition… Many don’t / cant believe it…..
Fibromyalgia was (for me) a culmination of many issues. Difficult formative years, Scoliosis at birth due to forceps delivery going wrong, Cancer at 27, migraines from teenage, Heart problems, Diverticulitis, Hypertension, Malabsorption, Arthritis & so on & so on..
Most of which have crept up over the years – meaning a very passionate, driven woman was literally forced by her own body to STOP!
Plus coexisting with other conditions that cause widespread pain, including arthritis and diverticulitis, Fibromyalgia a nightmare to manage and since there is no cure, there is in my opinion – little point in receiving the diagnosis, other than to give an answer as to why you cant move on some days & why words disappear from your brain on others….
For me, it took just under 5 years to get a diagnosis and 2 years to get the DWP to understand that diagnosis…. (as it really did force me to stop everything). Then came the realisation that treatment for this nightmare is scarce in the UK – and many of us just stumble from day to day trying to balance dozens of meds (and I mean dozens) whilst trying desperately not to be zonked out to a point where you cant even function, all the while surviving on an income for a month akin to that you used to get in a couple of days.
It’s very different when you are able to pay for respite care / hydrotherapy / cognitive behavioural therapy (CBT)/ psychotherapy / counselling / acupuncture / massage / floatation therapy /massage therapy / O2 therapy / manipulation and aromatherapy –
… Sadly these are things many of us cant afford or don’t have any access too…
My point is, many images Gaga herself posts are of drips & hospital visits – Believe me if you rock up at a hospital in the UK due to a bad fibro-flare – You will be sent home and told to take pain-killers… You see, like Gaga, I know certain therapies would alleviate some of my worse symptoms… BUT unlike Gaga, these are just NOT available to the masses who suffer.
I am lucky – Believe me, with my life experiences, I have a CARRY-ON regardless attitude, something I attribute to a very stern father – No whining in my house or else kind of thing!
I just can’t break, …… so I installed a speech recognition software to my pc & this is how I blog on days my fingers don’t work and how I create flyers etc for charities I want to help. This was something I did, alone, with no support – as the support for simple things which can alleviate problems for suffers and may assist us to function better, like Dragon-speak, just is not there in the UK….. Not unless you can pay for it………
I will watch Lady Gaga’s netflix documentary with great interest, I will also keep an eye on the mood of the reporting…. I am just a little scared that despite her best intentions, there are a few spoonies who will now be compared to her, very unfairly….
From her documentary –
“I go from everyone touching me all day, and talking at me all day, to total silence, and all these people will leave, and I’ll be alone
I hear you……