The Patient's Voice: A Cry in Solitude or a Call for Community

Abstract

Many patients and caregivers navigate illness alone. Their isolation can stem from the intrinsic experience of illness or arise in relation to the wider society's lack of support. Reading illness memoirs is one way to explore how individuals deal with isolation. My goal is to present the compelling voices of particular patients and caregivers with the hope that readers might listen, connect and be moved to build communities of caring.

Narrative empathy and illness memoirs: Arthur Frank'sAt the Will of the Bodyand Kathlyn Conway'sOrdinary Life

“…The authors consistently highlight a pervasive sense of loneliness and isolation of several kinds: from the healthy, from loved ones, from the body and from the self 48. Conway shows how they ‘all went through the shock of diagnosis, the fear of treatment, the struggle to manage our lives, the difficulties with the responses of our family, friends, and doctors, the profound loneliness’ (p. 5) 4.…”

Dissolving Dualism in Medicine: Reuniting the Body and Mind through Patient Narratives

“…Middlebrook felt that the witnessing of others was an important way to hold onto the pieces of herself and start to bring herself back together. Patricia Stanley (2004) also encourages those around the ill patient to engage in empathy and witnessing, and to make an attempt to reconnect and restore community with those who are isolated by illness. For scholars and patients who are writing these narratives and describing these difficult identity crises, witnessing on behalf of those around them seems to be an indispensable part of reconstructing a sense of self that has been damaged by illness, as well as a sense of community between healthy and ill persons.…”

“…Narratives of illness are one way that community can be fostered and restored, by allowing the patient to share the details of their experience and for others to engage with the ill person in new and unique ways as they develop a deeper understanding of the what the ill person is going through. Patricia Stanley (2004) describes the tendency of ill persons to navigate the illness experience alone, and to feel isolated from those around them, including health persons and loved ones. Stanley points out how damaging this isolation can be for the person experiencing the illness, and recommends narrative approaches to help give voice to the patient, minimize their sense of isolation, and restore and rebuild community in spite of illness.…”

Strengthening a Praxis of Suffering

“…Compassionate testifying enables powerful healing connections to be built in which mute suffering can be expressed through stories. In turn, stories enable meaning to be made, lessons to be learned, communities to be built, and altruism to be born (Stanley 2004; Staub & Vollhart, 2008).…”