I don't want to be known as the girl that constantly moans she is in pain so I normally keep quiet and try to get on with my life without mentioning it but then I get the ignorant, 'I thought you was ill?' questions thrown at me.
I cannot win. I talk about it and I get people having a go at me for moaning, I don't talk about it and go about life the best way my condition allows me to and I get criticized that I don't look or act ill!
When you live with pain every day, you are forced to adapt to it, it's either that or lay in bed crying, getting further and further into a depression you'll never get out of. I am not willing to do that to myself, it's depressing enough having hyper mobility itself.
Laying in bed crying might be the easy way and how some ignorant people think I should live my life but I won't. I have the few off days yes. It is a daily battle to get out of bed when you barely sleep anyway because you're suffering with chronic pain, as for going about daily activities other people take for granted, it's bloody hard work! I use so much energy just mustering up the will power to go about a new day.
I can smile, laugh, and have fun and I try with all my might to not let the pain I suffer with get in the way but that doesn't make the pain any less real or unpleasant.
I am not living the life I want to, or used to. I used to do dance 3 or 4 times a week for at least 3 hours a day, I used to rock climb, I used to paint ball, I used to be active from dawn until dusk. I had a full time job for 3 years whilst suffering through the pain, So I do really get fed up with certain ignorant people thinking I am lazy etc.
There are 2 different type of ignorant people when it comes to HMS. The ones that judge you when they know nothing about it and the ones that read up about it for all of 30 seconds and think they know everything about it.
You could argue that there are 3 types of ignorant people when it comes to HMS as some people who suffer from it may get it in only one joint and go on like other people that suffer from it are Drama Queens. All I have to say to them is aren't you lucky. I'd love to have it just in one joint instead of my whole body!
I have seen and spoken to people that suffer from it much worse than me so I really cannot imagine how they feel about it.
As a HMS sufferer my connective tissue is more stretchy and fragile than a non-sufferer, my joints are unstable and tire a lot quicker as they work a lot harder.
Suffering from a largely invisible condition isn't easy. Just because I'm not walking around with a decapitated head under my arm people think I am okay. I'm not all wrapped up in bandages so I am okay. I went out last week, I must be okay!
Although Hyper Mobility Syndrome can't kill you the people judging you, the pain, the fact your life isn't the same as others can eat away at you. It's a very misunderstood condition and is still in the early stages of research by medical professionals.
The next time you think of judging someone with a condition you don't understand, remember how your ignorant comments and bitchiness hurts and take on board how you look to them. Do you want to be known as ignorant and horrible? I didn't think so. Everyone is different but it doesn't hurt to all be nice.
