Invisible

What if I were invisible?

What a ridiculous question. I am invisible. Not in the way you're thinking of - yes, you can see me, I don't have superpowers, but do you actually see me? Or do you just see a normal girl? Even worse, do you see a lazy slob who lounges around the house all day, scrounging off the government, in the lap of luxury?

I may not be invisible, but a huge part of what makes me me is. Although I wholeheartedly agree with what has been said before me by countless others - I am not my illness - it still plays a huge role in making me me.
    It impacts upon the way I look, not just needing glasses and wearing odd splints and tubigrips when I need to (and in the future, using a wheelchair), but the way I actually look. It affects my weight, my height, and my skin. Without my illness, I would not look the same. Yet no stranger looking at me would think I was anything but a healthy young adult.
    It impacts upon every single thing I do. Every action I take must be thought about beforehand. Some things are not good to be stopping in the middle of - I need to think carefully first to make sure I have both the strength and energy required to finish what I start and that all my joints are currently in their rightful positions and not in immediate danger of falling out. I'm apparently not very good at judging these things, however, and often end up lying on the floor howling with pain as opposed to actually doing the task at hand.
    It's made me into my clumsy, forgetful self. One of the main things people who know me in real life would describe me as is clumsy. It's not through lack of being careful, it's just how it goes in the world of an EDS sufferer. We are notorious for our utter klutz-ness.
    It has factored into my personality - the morbid, sick sense of humour that comes from physically damaging yourself on a daily basis and having nothing else to do and no other way of dealing with it but to laugh it off. The mental scars of growing up with this undiagnosed, of everyone around me thinking I was lazy and unfit, being disgusted my by inability to do such simple things that even the fat kids could somehow manage to do. I was a social outcast, but I liked it that way. I'd spend entires days shut in my room with nothing but books to read as they were so much less physically exerting. I started playing video games because they were less physically exhausting than real games. I grew to love the internet and my ability to communicate via typing without the horrors and embarrassment my social anxiety forces on me in real life. In short, I am a computer geek who adores the written word and is in love with the beauty of the English language. I very much doubt I would be the same person were it not for my illness.

Despite all that, it is very much an invisible disability. I am reminded of this every single day when people overtake me on the street and glare at me for walking so slowly and forcing them to walk around me with my clumsy swaying gait. I am reminded of it every time I get on a bus and there are no seats available and no one is willing to give theirs up for me. I am reminded of it when I do manage to get a seat on a bus and then the next stop some elderly (yet very spritely!) people get on and give me the most disgusted looks you could possibly imagine for not jumping to my feet and offering my seat up. I am reminded of it every time I visit family and they cook a wonderful roast dinner but serve me huge lumps of tough meat and act both surprised and then patronising when I have to ask someone to help me cut it up. I am reminded of it every time someone delivers a heavy parcel and tries to hand it straight to me, unable to understand why I'm asking them to place it on the floor instead. I am reminded of it every single day in a hundred small ways, in the looks of shock, horror and disgust people give me, in the disbelieving tones of their voices, and in the way they ignore it at every given possibility.

I wish I wasn't invisible.