I hate talking about myself. Even when it comes to writing in the 'about me' sections on profiles like facebook I usually just type something like 'I don't know what to write here'. Today I think I need to write about myself, just to get something out of my system that has been bothering me.
Every single day of my life is like a childs game of make believe. I am constantly pretending. I am not doing it for me, well for the most part anyway, I do it for you.
People hate it when they ask you how you are and you reply with something other than 'oh, I am alright'. They don't want to sit there and listen to a long list of all the joints that have come out of place today, all the aches and pains and all the hideously embarassing side effects your condition has.
Real friends, they will turn around and ask 'no, really, tell me the truth about how you are'. But every aquaintence, hell even family members, do not want to know the gory details of what you are going through.
You really quickly learn when you have a disability or illness to push yourself. Push beyond what hurts, what you can't or shouldn't do. Constantly pretend things are better than they really are. Some of us are so good at it that people will question the validity of your disability or illness. Only around the people who you know really understand do you let your guard down.
I have a group of friends, we are all in the same boat. All sick and disabled. Around them I can be honest and they can be honest with me about how we all feel and how horrible things have been lately. To the rest of the world we put up a front. Every single one of these friends is currently struggling to get the benefits they need and deserve. The only one who succeeded is me. Why? Probably because we are so good at make believe that when we need to let down the walls to a stranger we can't actually do it. No one every considders this when assessing someone for benefits. No one thinks to ask 'are you pretending to be ok, putting a brave face on it?'
Even around family members we will put on a front. We don't want them to worry too much about us. We pretend things are ok. I pretended not to be in pain around my family while my teeth where gritted hard. They couldn't see why I would stay sat down and ask my husband to fetch something for me. Or why I even needed a wheelchair. I put a huge amount of effort in to tricking them into believing I was ok to the point that they stopped believing I was ill or disabled at all.
I laugh, I smile, I have a social life. On nights out where I feel some what ok I will even get up and dance. Those are the lies I tell myself. That I can still dance. That I can still sometimes do what a normal 25 year old does. I always pay for it afterwards. I need to lie to myself this way. I used to teach dancing. I used to ride horses. I used to do gymnastics and trampolining. I used to take singing lessons, dance lessons of my own. I used to be able to walk miles. Sometimes I need to pretend that I can still do these things or I might go insane.
Everything feels unfair when you are sick or disabled. It feels like you have been robbed of life, life that other people get to live. For every day you see me get up and do something like dance to one song there are 6 days you don't see me sat in bed or just sat in a chair unable to do anything else. You don't see the conesquences of our make believe. You don't see how tiring it is to us.
If you see me in the street and I am pretending to be ok. Ask me to show you my teeth that are falling appart where I have ground them whilst pretending I was ok when really I was in pain. Ask me how much it hurts. Ask me if I need a hug. Just something, anything.
It feels like the world is against us. So we pretend we are ok. But this makes the world hate us more. I always hated catch 22 situations. Now I am trapped in a huge one. So is every other sick and disabled person I know.
