I have been feeling awfully consumed by my condition lately. Every morning I am comparing how much pain I am to the days before. My muscles have a pulse and there are moments where each motion feels like a stiff struggled war against my body. I been having problems getting treatment and healthcare since I have been in Denmark. It is very easy to step inside of my disease and let it wrap me up. I find myself muttering in the silent moments of my days “this does not define me,” “I am not my pain,” “this does not define me.” But believing the voice in my head is easier said than done.
When my mornings are dictated by vitamins and my evenings by a routine of physical therapy it becomes easy to forget parts of myself. It feels like my passions need exercising, but I am too tired to chase after them. Pain is an easy excuse to stay in bed and hide behind a computer screen, while the world continues around me. My condition holds me back, but it is also an excuse to be passive. I dread being one of those people who is consumed by their disease.
Realizing my own strength, my own identity, requires stepping out of myself. I was skyping with a dear friend last week and outlining my concerns. On the verge of hysterics I explained that I was having trouble seeing through the fog of my pain to a clearer version of myself. She smiled endearingly and went on to empathize with my experiences and explain how she see me. She said when she talks about me my pain doesn’t even exist. “You’re my friend who I can’t keep track of. When I describe you to people I say I don’t know what country you’re in and that you’re off to change the world. When I define you I don’t even think of your pain.” This was a ground breaking thought, that the people in my life, the people who see me at my crumbling worst, don’t define me through my condition.
This reassurance lasted me about a week until yesterday when I spent the whole day inside. I had the opportunity to go volunteer at the refugee center again, but I turned it down to stay in my pajamas all day. I had three papers to write and my hips were crying out. Getting out of bed didn’t seem like a battle worth fighting. As the hours passed in procrastination I started to beat myself for passing up something I loved to spend time with netflix. I was mad at myself, my body, and my lacking motivation. I began reiterating my concerns to my brother. What if this condition becomes me?
Like my friend, my brother was unwilling to entertain this idea. He said we’re still working on ways to deal with all of this and that he was proud of me for how little my pain controls me. I once again tried to define myself through someone else’s eyes and suddenly my reflection didn’t look so bad. Sometimes I think it is important to resume-check myself and remember all that I have accomplished in my life. Ive worked with non-profits and organizations all over the world to pursue what I love. I know what I want to do with my life. I kind of have my shit together. I should and need to be proud of myself, even if I cant get out of bed some days.
once told me that if we had friends who treated us as badly as we treat
ourselves we would stop speaking to them, and I can certainly be a casualty of this
truism. Im learning to be a little bit nicer to myself and that living in chronic pain is not the same as being defined by it. I am relentlessly thankful that I have these people in my life to hold up their mirrors and say “Look. Look at who you really are. Look at how we see you and revel in that person.”