Fibromyalgia is becoming more prevalent and we see more and more people diagnosed with the condition every single day. Before I continue on with this piece, I need to point out – so f**king what if a person happens to be famous? It doesn’t change the fact life is going to be utterly shit for a long time for them now. Perhaps for the rest of their life. There’s not a single day where we can’t think, “Oh poor Lady Gaga has got fibro.” because the press tell us that’s how we have to think. Well I couldn’t give a shit. I’m too busy thinking about myself and the other thousands of spoonies (to be explained later) around the world. People bang on about how brave Lady Gaga is for moving with all that pain. Well fucking bully for her. What about me and the thousands like me who can barely move. Because we are not favoured by a screen career or we are not singers our heroic efforts really do become nothing. We become nothing and our struggles are nothing.
Then comes the fact that we achieve things and they are not even acknowledged by our significant others. That, for me really does sting. Then he wonders why he gets a short, sharp fuck off when he develops spaghetti arms later that same day.
Our loved ones can try to be as caring and understanding as possible and they can either crack being understanding and wonderful or they can do nothing but blunder heard first into an enormous pile of caca with all the style, grace and tact of a fucking woolly mammoth. It’s true, it really is!
Should you, like me, enjoy trying to flog a dead horse, you can of course try to bring some semblance of knowledge to said almost dead horse in a vain attempt to make these people gain a little more understanding and to not speak to you with all the tact and decorum of a 20 pound lump hammer!
Seriously the way that I’ve been spoken to by both friends and complete strangers in the past? They have been experiences that I can liken to being slapped across the face with a three week old mouldy kipper.
Now many people that decide that their infinite wisdom presents them with a plethora of little nuggets of wisdom all of which they can and will bestow upon us with monotonous regularity.
Some of those nuggets can be found in the article below.
Y’know guys, the next person to say that they are going to pray for me is heading for a swift kick between the legs – male or female, it gets the point across nicely.
There are so many comments that are so downright hurtful but people don’t even realise that they are hurting you. They honestly think that they are being kind and supportive. Well guess what buddy? You’re not.
People don’t understand just how draining having a chronic illness like Fibro is. The energy that even just brushing your teeth can drain from you. A lovely lady called Christine Miserandino devised something called the spoon theory, which helped to explain to significant others/family/friends just how debilitating it can be. You can read about it here:
It’s such a simple way to describe what we go through every single day, but my gosh does it ever get the point across. This explains my use of the word “Spoonies” before. This is what many chronic illness warriors will call each other. It’s who we are.
But people need to understand that there are days, many of them in fact, where I cannot remain stood for more than 30 seconds to a minute without dropping to my knees in pain. Days like this mean standing in the bathroom and caring for my basic hygiene impossible. Even on a good day, I cannot brush my own hair as my shoulders won’t go up that high. Nor can I wash myself or put on my own clothes without help. It’s soul destroying to not be able to do that it really is.
May 12th is international Fibro day, and I will be writing more posts about it before then. I’m so sorry if the tone of this post has come across as hostile or aggressive at all. All I’m aiming to do is promote an awareness of the disease and help explain the things that make make a Spoonie a little bit cranky.
Thank you for reading.
Be kind to each other.x