Everyday acceptance of chronic pain necessitates that we reflect our attention away from pain to the non-pain facets of life. We go to work, go to school, take care of children, and have social lives. But what happens when we miss our deadlines or maybe an exam? Maybe we have to rely more on our partner to pick up the children from daycare or we have to call out from work. Perhaps, we have to learn how to take on fewer responsibilities in a world that constantly throws obligations at us. Do you ever feel like a failure? I do. I can admit it. I often have to say: “my body made me do it.” I have carried the weight of my career to the brink. At that border, I am sometimes halted by the pain my body is experiencing. It is there where I am left explaining to the non-sufferers why I couldn’t accomplish all that I desired. It is there I feel like a failure. We live and experience everything through our bodies. At the same time, in the moments that I feel like a failure, the blame falls on that fateful accident that left my body transformed. As a chronic pain sufferer, I am fluent in two languages: a world that is very different from the everyday world and the world in which I must conduct my life. In order to survive in two worlds, I must translate the first language of pain constantly to those who have never suffered. It feels like an excuse and who among us wishes to always feel like we are making excuses. In this sense, perhaps we have the unspoken desire to wish that for one minute, or hour, or day others could enter our body and truly understand the affliction of living with pain.
I have pain and I live in a cycle of wanting to do my best in all areas of my life and then my life is stopped by this disease for days, weeks, and sometimes months. It is in this cycle, that something eternal like chronic illness and pain gets misunderstood. After all, the cousin to failure is the “it’s all in our heads” or “if we can’t do it, it means we didn’t try hard enough” philosophy. Through this blog, personal involvement in pain support groups, and through interactions and interviews with chronic pain patients in my work, the one thing that is evident when it comes to the “it’s all in my head” attitude towards invisible disease is that patients would love if it was simply all in their head. At least, in that sense, it is merely a character flaw and something that we can overcome. Chronic pain and illness would then cease to exist if it was all in our heads. Instead, as a chronic pain sufferer, I am a reluctant tenant in this country. I hold a passport that allows me to travel to a world I created and want but I don’t entirely dwell there.
When I feel like a failure, what am I saying about my body? I accept chronic pain and I have directed my attention away from pain. However, despite all the attempts to forage on, I do not have complete control over pain. Is that a flaw or a failure? Perhaps, acceptance and coping with pain means understanding that controlling pain is impossible. This is an extremely difficult part of acceptance because to acknowledge that pain is out of our control; and, therefore can halt our lives at any moment, is frightening. It is much easier to believe that we have somehow failed rather than admitting that we live with something that is totally out of our control. After all, responsibility, a fulfilling career, and a family is our currency in life, that is where we are viewed as productive members of society, and that is where we should feel the most in control. I guess this is a fact of life that we all face. However, to be chronically ill means we face the unknown and the inability to control our circumstances to a greater degree. It is conceivable that the loss of control and the inability to command our body to do what we desire or need it to do is masked in feelings of failure. As I negotiate the complexities of living in chronic pain and attempting to exert control over my body, I am slowly beginning to recognize that the feeling of being completely responsible for my body is counterproductive. It isn’t my fault. I didn’t ask for this and I am doing my best.