Forward motion was the constant theme of my life. There was always something to do and sitting and resting was a foreign concept to me. I would often go to sleep at night thinking about everything I thought I had to accomplish the next day. If I had to pick a word to describe me it would have been driven. I would dedicate myself with every fibre of my being to my various aspirations, not stopping until I had accomplished my goal.
Suddenly, everything came to a screeching halt. Sarcoidosis and Fibromyalgia entered my life and for the first time I learned that strength of will is not always enough. When I was first diagnosed, I demanded my specialist fix me in three months because I had things to do and could not be bothered with this illness. I assumed that just like everything else in my life I would grit my teeth and will myself into health and look back at this as some sort of uncomfortable inconvenience.
As three months stretched into 6 and finally into 12, I began to understand that will alone would not make me better. To the outside world other than the weight gain from the prednisone I look the same. It is easy for those around me to forget that I am ill or the pain I live with everyday. Even as I type this my hands and feet are burning. Despite a full night of sleep I am exhausted and am fighting to stay awake.
One of the things I find most irritating about being disabled is the super crip status people expect me take on. I know that I have always been tough but if I say I cannot do something, that means I cannot. That short three blocks that you want me to walk might as well be the Boston Marathon to me. It makes me want to scream you try it. Try having ever fibre of your being ache as your body becomes drenched in sweat because each step is a struggle of unimaginable proportions. Living in an ableist world means that there are those that don’t believe that concessions are necessary. Those of us that have a disability are expected to rise above at all costs and therefore pose no burden to those around us with our pain and our suffering.
To talk about our pain is construed as whining. Someone will always come up with a story about a friend of a friend who had a disease similar to yours who took this herbal pill from Tibet or some mountain that you have never heard of and suddenly was cured and got on with their lives. More likely than not this friend of friend just finally got the message that talking about their illness was not cool and decided to be silent. You see we can talk about pain but only in terms of what we are doing constructively to get better and not about how much it hurts or hard it is emotionally. It makes people uncomfortable and so it is understood as easier for all if we would just be quiet. I know this to be correct because the moment you answer truthfully about how you feel the subject is quickly changed or silence ends the conversation.
Another thing, stop telling the disabled how lucky we are, or how you wish you could be at home just like us. Really?? I’ll trade you my body with all of the pain and you can stay home, spending the day on your back propped up by pillows with your feet on a heating pad watching endless hours of court tv and CNN in the hopes of keeping your mind somewhat active. How much “fun” do you imagine it to be when your three year old asks to go to the park and you have to decline because you would rather be stretched on a rack than deal with the discomfort of the benches?
Sure, I don’t have the stress of ignorant co-workers or answering to a boss but each day I answer to the whims of this backstabbing body that seems to have a mind of its own. I wake and sleep when I want but that is because I have no place to be and no one dependent on my labour. In a world where much of ones identity is derived from what kind of work one does this makes me invisible and to some unimportant.
Finally, don’t expect me to be unchanged by this experience. How could I possibly be the same person after years of chronic pain and watching the life that I once led evaporate before my eyes? No, I’m not going to laugh and smile to make it easy for you either. I suffered a real loss and at some point that needs to be acknowledged.
Even if I had not gotten sick I would have changed, no one stays the same. Change does not mean that everything about me that you once knew is gone, it just means that dealing with three chronic illnesses has altered the way I view life. Things that I was once able to take for granted I must now give great consideration to.
Please just stop and think before you speak. Moving from able bodied to disabled is a life changing experience and each person needs a different kind of support. Trying to pretend that nothing has changed is insulting. Yes these chronic illnesses are invisible to the naked eye but they are felt in every fibre of my being. Respecting me means respecting my illnesses; they are a part of me just like the the hair on my head. If I have to ask for help, recognize that it is a concession of my own will and I don’t need to be shamed for asking. There will always be a time for laughter and smiles but sometimes know they exist to hide the pain I live with that you have difficulty dealing with.