Life with an unwelcome guest – caring in a context of protracted bodily pain

Abstract

Protracted bodily pain is a phenomenon that often affects a human being's whole life. Care of human beings with protracted pain is challenging because pain is not always measureable, and the experiences of pain are subjective, unique and shapeshifting. Therefore, the aim is to highlight what protracted bodily pain signifies for the human being, and human beings' experiences of what is caring in a context of protracted bodily pain. Four informants with protracted bodily pain took part in a focus group interview. The interview was analysed by using a qualitative content analysis with a hermeneutic approach. The findings show that protracted pain renders human beings speechless, limits and robs them of their lives. The pain is described as a domineering, unpleasant and unwelcome guest. The pain can change the human being's personality and creates feelings of guilt. Uncertainty about the origin of the pain as well as a nonchalant treatment or not being believed intensifies the pain. Human being experience mastering the pain, encounters with caregivers who can ease the burden, community with others and finding that little something extra in everyday life is experienced as caring. From a caring science perspective, the relation between protracted pain and suffering is obvious. Suffering emerges as illness suffering, as life suffering and as suffering caused by care. Professional as well as natural caring is important in a context of protracted bodily pain. The human being longs to encounter caregivers who are courageous enough to lay themselves on the line. Community with people who are prepared to share the burden eases the heavy burden that pain brings to life, it brings hope and relief.