Vivre avec ‘elle’: Transformation in Parkinson’s disease accounts

Description

This paper explores the transformations experienced by individuals living with Parkinson’s disease, drawing on the patient perspectives in Catherine Laborde’s Trembler (2018) and Sonia Rykiel’s N’oubliez pas que je joue (2012), alongside the carer perspectives in Colline Hoarau’s Notre vie à trois (2015) and Dalila Raposo’s Putain de Parkinson (2020). Laborde’s deeply personal account blends reflections on her public identity with the disorientation and progressive changes brought by Parkinson’s. Similarly, Rykiel’s narrative chronicles the challenges of navigating life with Parkinson’s as a celebrated designer, offering insights into the vulnerability and resilience required to adapt to the disease.
In contrast, Hoarau’s work illustrates the impact of Parkinson’s on a couple’s dynamic, emphasizing how the illness reshapes physical and emotional landscapes, transforming both partners’ roles and revealing the complexities of caregiving. Raposo’s testimony presents a bold and unfiltered perspective as a carer, capturing the frustrations and resilience involved in supporting a loved one through an illness that progressively transforms them.
By examining the interplay between these patient and carer narratives, this paper highlights the progressive ways Parkinson’s reshapes identities, relationships, and daily life. Grounded in the field of Medical Humanities, our analysis draws on frameworks such as Arthur Frank’s illness narratives, Ruwen Ogien’s ethics of suffering, Rita Charon’s narrative medicine, and Havi Carel’s phenomenology of illness to explore how these authors articulate the transformative dynamics of living with and caring for someone affected by Parkinson’s disease.

Period	30 May 2025 → 1 Jun 2025
Event title	Women in French UK-Ireland Biennal Conference 2025 - 'Transformations'
Event type	Conference
Location	Leeds, United KingdomShow on map
Degree of Recognition	International