For over a week now I have been silently fuming away to myself over a comment left over facebook:
Status: not impressed with the back pain and is thus going to bed to read, and drink tea, and take painkillers, and sulk about it all!
V: Nice. Some of us are currently sat at work with mega back n head pain n would also like to go to bed
Me: Nice. Some of are seriously ill and will never be able to work.
V: so how do u go to uni n the pub?
Me: I do 7 hours a week in uni, and if i go to the pub its after class on a Thursday, the rest of my time is spent at home in a lot of pain, completely exhausted
Me: It’s a hard illness to understand, it’s taken me years! The best way to explain it is to imagine a rubbish poundland battery, you only have a small amount of energy in that battery. You can use it in tiny amounts over a long period of time, or you can do slightly longer burst over a shorter period time, either way it runs out. I choose to go to uni as I was starting to a bit mental doing nothing every day for years, in fact my specialist recommended it, and I’m glad I did. I don’t feel quite as useless!
Rach: what do you suffer from indra? xx
Me: mitochrondrial myopathy, it’s a form of muscular dystophy, and is incredibley annoying (edit: understatement of the year, huh!?)
Rach: oh that sounds horrid, i don’t like it when people comment on things so publicly when they do not understand the full extent of thing. I remember in college you were always hard working etc and struggle to imagine you as a “jeremy kyle” style layabout… chin up! xxxxx
Me: tbh Rach it doesn’t annoy me, as I understand that from an outsiders point of view I don’t seem that ill etc, As I said it’s a hard one to understand, espically as it’s not common and on that people only see me on the ‘better days’, etc. Still it does mean I get a lot of cat snuggling done!
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The question I’m raising here, in this blog after all that cutting and pasting from facebook, is why did I feel the need to justify myself? I don’t think I am on my own either, I’m sure that many of you reading this have done the same, either for yourself or for someone else, but why do we do it?
I have thought of this a lot over the years and have come to the conclusion that it’s because people can’t ‘see’ the illness. My father suffered from the same thing when he terminal cancer, people couldn’t comprehend that someone could be seriously ill and look fine (my father never lost his btw). I too noticed the change when I started having to use my walking stick.
I was in a cafe once with my Mum and Stepdad and I was not having a good day! I have problems with my hands, and was struggling to lift my cup. I decided I needed the toilet and set off on the long hike across the store, to the not so convieniently place loo. (but that’s a whole other rant!) All the way through this episode I was stared at by a table of old ladies, all wearing one of those ‘oooh the youth of today they are all on drugs’ looks on their faces. I didn’t, but I had the complusion to tell them what was going on, why!?
These days, as I said, I have my stick, and so now get the ‘awww poor love’ looks and often get asked what is wrong with my leg. (Which I find an odd question as I have always associated walking sticks with general ill health, rather than leg related, but maybe it’s just a polite way of asking what is wrong with me, which I don’t mind at all, it’s better than being stared at!)
So, what is all this rambelling about?
I’m calling for a start to a campaign to raise awareness of healthy looking ill people! (and a ban the the line ‘well you don’t ill!’ :P) I think the general public need to understand that many severe illnesses are on the inside, and you don’t necessarly have a stick, wheelchair, disfigament, jaundice or antlers sticking out of your head!
What do you think? Do feel sometimes the need to justify like this? Or is it just me?
NB: ‘V’ (realname with held) has since disfriended and blocked me on facebook, oh the social shun!