What does your rheumatoid arthritis look like? Recently I have been involved in a project that helps people with chronic disease (mostly diabetes) visualize and confront their disease. The organization is the ‘The Betes’ if you wish to look in on their activities you can at: http://thebetes.org/
‘The Betes’ uses theater, puppets and visualization to assist people in confronting their unseen chronic disease. For those who go through the process they gain a new understanding of their disease and the factors that influence their feelings about the disease. Confronting disease in this manner makes it real for most people who participate.
RA is a little different than diabetes. For one I have never met a person with RA who lives in denial. Instead we tend to fight for the diagnosis. We often confront RA even before our doctors think it is real.
This past week I met a person I used to work with. This person asked how I was doing. I replied I am getting along well, most days I get out for a walk and I am enjoying some activities. They said I looked great and remarked that since I am cured I can now go back to work. I was stymied. She looked at me and saw a 58 year old man walking upright and looking well. She didn’t see the hidden me, the man who cannot sleep most nights, the man who cannot get moving in the mornings, or the man who hurts so bad before his biologic treatments, that walking is a chore. In her instant glance she didn’t see me or my RA, she saw a vision of what I used to be.
I was very angry about her comment for a split second. I thought how can she not see me? But then I got over it. I realized I am judged like this every day. I am judged as cured when I walk into a store after parking in a handicapped spot. I am judged when I am late for a morning appointment. I am judged by my family when they see me and I look good or bad.
Why must we be judged? I do not know for certain. I wish I did. I cannot even say why I do not yell at the world every few steps, I am not cured. Not that I want the world to feel bad for me, but I am just hoping not to be judged for my actions.
So what does my RA look like? I would say it looks like judgement. It looks like stereotypes, and sometimes it looks like I am ‘cured’ (whatever that means). It is angry sometimes and sometimes it is meek like a wilted flower, hiding in the shadows and wanting to remain hidden. Many times it is red hot joints on a cold day or stumbling to move across the room when I have a flare. My RA is not one dimensional, and it cannot be summed up by how I look on any given day. It is a monster with 70 heads and 40 bodies; it is everywhere in my body and nowhere to be seen most days.
My RA is wrapped around my body and it squeezes my joints. RA holds me back and makes me tough enough to shrug off the looks I sometimes get. My RA sometimes makes me hide from others, causes me to be loud so I will be noticed, and gives me the drive to prove that disability still means able, just with physical limitations.
My RA makes me angry when people ask me to carry something and even more angry when they don’t. It causes me to laugh at the absurd and cry about the routine. It is a paradox, I wish I could control but know that I cannot.
My RA is part of me, sometimes it controls me, and a few times I have ignored it. When it gets out of hand, I am in bad shape. I treat it, suppress it, think about it, and anticipate when my body will change once again.
In short my RA is complicated. How about yours?