Sunday, 7 March 2010

disbility in hiding

M.E/CFS and Fibromyalgia are among the diseases that create hidden disabilities. if you look at me sat in a chair i look fine no visible signs of illness the majority of the time.

but when i stand and start to walk its no longer hidden some days im quite good and only if you know me well would you see the tell tale signs but on others like today its obvious. to rise to standing is slow and labored my teeth gritted against the pain. each step is like watching a toddle learning to walk slow and fraught with danger, i wobble and stumble, the effort leaving me exhausted both mentally and physically.

most days to the out side world i cope i get up, get dressed, laugh and joke, what they dont see is what i hide not only from them but from myself deep inside hidden in a locked box is the fear that things could get worse, i no longer think in terms of getting back to normality and living a life like i used to. my ambition is to be able to keep house! something that most of us take for granted.

to day that locked box was opened for a short while as when i tried to stand this morning i could not, the pain was unbelievable even by the standards of what i normally cope with. i could not bend to dress and had to be helped by my hubby not something you really expect to have to happen when you get married and not a role that we were prepared for. the subtle change from partners in every thing to patient and carer. thank god for the stair lift or today i would have been trapped in my bed room not able to see the garden and appreciate the sun in the conservatory.

the reason that my disability is so hidden is that no one sees me, on days like this where basic things are hard i dont leave the house and visitors other than family are few. im not complaining or moaning but stating fact. i only leave the house on the days where i feel good, and even then most of the time its for very short periods.

i hide behind our front door not from choice but because the world is not designed to help me and others like me,

that doesn't mean i want everything to become accessible to me or that i feel excluded but the very fact that buildings have steps, paths have curbs, and my illness is not visible makes the world a place thats inaccessible with out help. my problem is independence and the lack of it available to me because of this god awful family are great but they like me are ignored by society at large and not helped. yes i am disabled yes i have a chronic devastating illness for which there is no cure. But unlike many other disabilities mine is ignored by many in the medical profession, in government and research. am i alone in having this illness no i share it with over 250,000 other people.

today i was reminded by my body how broken it really is. most days i can hide from this just as the rest of the world is able to ignore it. i hide so i can survive to fight another day, i hide so i can cope and help my family cope, i hide so i dont have to explain it to any one else. all of my reasons are to help me cope and carry on living.

what are your reasons for ignoring it? my disability is hidden because some people just cant be bothered to look, whats your excuse?

No comments:

Post a Comment