Musings on Mortality: Coping with the 'four tensions' of being ill
The experience reminded me of the writings of the medical sociologist, Arthur W. Frank. Frank has identified "four tensions" that get in the way of our becoming more than our illness when we are sick. In other words, our illness becomes a "medical distraction from living." These tensions are about how each of us handle being ill and how we are treated by others, especially medical practitioners. Frank writes that depending on how we handle these tensions, having a chronic condition can lead to a "disenfranchised illness" that "reduces life to mechanics." This is what happened at that office visit, I became a matter of mechanics.
The first tension is between illness as an experience and disease as a condition of the body. To experience our illness is to see it in the context of our entire lives. We can either be completely consumed and identified with our diagnosis, the condition of the body, or we can live as if it is an aspect of our totality and that the illness is yet another experience.
The second tension is between being a patient and being an ill person. We are people of complex needs and interests with varied life-circumstances: aspects of ourselves that physicians should want to know about. More often than not we are reduced as a patient in relation to our practitioners. We are not seen as a person with an illness. I was quite impressed when my new opthamologist called me at home regarding my eye condition and referred to me as Dr. Alecson. I told her that I was not a Ph.D., which she had assumed by reading my chart and noticing that I am a professor. The conversation that ensued was not between a patient and her doctor, but between an ill person and her doctor.
The third tension is between our medical history and an ill person's story. Our medical history is an aspect of our illness story which is equally about how our illness changes our lives, effects our loved-ones, plays out in a work environment, brings up our mortality, influences our decision-making, effects our self-esteem, etc. I have never filled out a medical questionnaire that asks about any of this. If you're lucky there will be a question that asks for your occupation. Sometimes if you are admitted, there might be a "spiritual assessment" that is reduced to one question that asks your religion. That is not a spiritual question, it is a religious one. An example of a spiritual question is, "Do you feel like you are being punished because of your illness and if so, why?"
The last and perhaps most important tension is between the provision of treatment and the offering of care. I am extremely pleased to be receiving both from my primary. When I am in her examining room I feel heard and understood. Her concern for me is genuine. Instead of telling me that I am a broken faucet that cannot be fixed, we discussed a plan of action that she assuresd me might alleviate the problem. We talked it through and I realized that yes, this might work.
I'm not saying it's easy to be more than our diseased body when we are sick, but we have to try.
Frank, A. W. (2014). Being a Good Story: The Humanities as Therapeutic Practice In Jones, T., Wear, D., & Friedman, L. D. (Eds.), Health Humanities Reader (13-25). New Brunswick, N.J.: Rutgers University Press.
Deborah Golden Alecson is a death, dying and bereavement educator and speaker who resides in Lenox. She is the author of three books that deal with her personal loss. Learn more at deborahgoldenalecson.com.
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