Fibromyalgia is a bit of a ‘catch all’ diagnosis. It’s often handed down when doctors don’t know (or do not have the incentive to discover) what’s causing the myriad symptoms that the patient is suffering with – and those symptoms are myriad; over 200 at the last count. Because of this complexity, finding the root cause or best treatment for each individual can be akin to searching for the proverbial needle in a haystack. Add to the mix the fact that Fibromyalgia loves company, and rarely travels without a companion illness, and it becomes clear that medicinal platitudes are rarely going to be helpful; it’s the person that has to be treated, not the illness. This is why some of the best allies are the ones who listen.
Like a lot of people whose disabilities are invisible, casual ableism is not something that sits permanently on my radar: I generally don’t have to think about wheelchair ramps or the absence of verbal prompts on a city bus. What I do have to concerns myself with is someone shaving parmesan onto my gluten free penne at a restaurant (this actually happened) because they don’t realise that what they may see as a dietary choice is really something that is keeping me out of the hospital. So when I first read a rather odd hit piece in a national newspaper last year, rubbishing a device that has huge potential for personalised health care, I didn’t understand at the time that the anger I was feeling towards the author was because she was clearly dismissing the experiences of so many of us whose bodies don’t run ‘like clockwork’. Continue reading “A Mile In Our Shoes”
I’m not writing this for your sympathy: I have no need, or desire, to receive a plethora of ‘get well soon’ messages (not to be ungrateful – it’s just a little beside the point…) I’m writing this for the people who, like myself, cannot use the word ‘allergy’, but know all too well that certain substances are detrimental to their health. I’m also writing this for the people that goad them. The people that claim that an absence of an EpiPen is a sign that we are merely fussy eaters: that the substances we put into our bodies have zero effect on the illnesses we suffer from. The ones who believe that if a reaction isn’t immediate and deadly that the ‘sensitivity’ is fake. This horror show is for you.
WARNING: GRAPHIC DESCRIPTIONS OF THE MENSTRUAL CYCLE ARE CONTAINED IN THIS POST. Continue reading “Bread, Barley and Blood”