Interrogating the Body: Exploring What It Means to Live With Motor Neurone Disease Using Phenomenology

Abstract

The experience of and indeed the academic literature on motor neurone disease have been dominated by a medical gaze. Given the severity and trajectory of the condition, it is understandable that medical narratives have been at the forefront. This case seeks to explore experiences of diagnosis as understood by the patient. The case uses phenomenology, a qualitative strategy that foregrounds participants as experts in their own “lifeworlds,” and uses four key analytical tools: intersubjectivity, temporality, spatiality, and of particular interest embodiment, to interrogate the data produced. Furthermore, the analysis distinguishes within embodiment, between Korper (the body as a detached object) and Lieb (the body as a social actor). The case fully outlines the phenomenological approach, how it was implemented through semi-structured interviews, and examines findings through a phenomenological lens. This case contributes to the understanding of the impact of chronic and life-limiting conditions, the impact that diagnosis has on self and personhood, and the structure of services charged with diagnosing motor neurone disease. Thus, as well as offering insight into how to do phenomenological illness, the case offers findings useful for clinical practitioners in the medical fields. The management of a diagnosis requires an understanding of the body as the subject of experience and early and adequate recognition of this may enable families to move more quickly toward reconstructing a sense of self and identity after diagnosis.