Stories of chronic kidney disease: Listening for the unsayable
Schick Makaroff, Kara; Shields, Laurene; Molzahn, Anita. Journal of Advanced Nursing (JAN). December 2013. Volume 69, Issue 12, pages 2644-2653. doi: 10.1111/jan.12149
Aims. To explore individuals’ stories of chronic kidney disease, particularly those aspects of experience that are difficult to discuss using language (i.e. unsayable). Background. Chronic kidney disease is continuous, but it is also life-threatening and sometimes people ask difficult questions about life and death that can be challenging and for some, impossible to discuss. These ‘unsayables’ are the focus of this article. The unsayable may reside both within and beyond language. Careful analysis of narratives of illness for sayable and unsayable aspects of the experience can help illuminate new areas of concern for people with chronic kidney disease. Design. Narrative inquiry, located in a social constructionist framework, guided this study. Methods. Secondary data analysis was conducted with 46 in-depth interviews (collected between 2008–2011) with 14 people living with chronic kidney disease. Findings. Through narrative thematic analysis, we identify that the unsayable includes the following five themes: living with death, embodied experiences that were difficult to language, that which was unthinkable, unknowable mystery and that which was untold/unheard. Whereas the first four themes attend to that which is unsayable for people living with chronic kidney disease, the last theme acknowledges that which is unsayable to people living with chronic kidney disease. Conclusion. Not all experiences of illness can be explicitly articulated in language. Listening for both the sayable and unsayable aspects of life with chronic and lifethreatening illness is an important nursing role.
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