Let us Help Preserve the Dignity of the Patient: Pathographies of Caregivers’ Experience; An Example of Jacek Hołub’s Reportage

Grażyna MOROSZCZUK

Instytut Literaturoznawstwa, Wydział Humanistyczny Uniwersytet Śląski, ul. Uniwersytecka 4, 40-007 Katowice, Poland , Poland
https://orcid.org/0000-0001-8482-8523

Abstract

The aim of the article is to discuss literature that sheds light on the problem of the identity of caregivers to persons with severe disabilities and, in particular, caregivers exposed to the suffering of their relatives. Being in close contact with death, witnessing the disintegration of care receivers identity, and facing their illness redefines the caregivers’ priorities, as well as disturbs and changes the perception of oneself and the world. Challenging to readers, the stories on how the strength of emotions constitutes the caregivers’ identity “in crisis,” both in their attempts to articulate their experience of (negative) threats to dignity and in their struggle to secure (positive) conditions to uphold dignity, have a “boundary” narrative potential. Aware of such a potential, the author investigates the ways in which literature participates in the recent re-evaluation of the perception of disability and illness. The presented research on the narrative strategies constituted in “disease-writing” requires a multidisciplinary approach and reflection in different areas of disease-related discourse, or pathographies, which include reports of witnesses and caregivers. It is also necessary to consider perspectives of contemporary positive psychology on the effects of crisis and posttraumatic growth. The author argues that mindfulness, solicitude, closeness, and presence in a relationship with sick relatives are indispensable to be able to “hear” what they do not communicate. Patients need support so as to live their physical and intellectual disability, disease, and dying with dignity.

Keywords:

trauma, dignity, disability, identity, crisis and growth