Abstract

RAIMONDI, Martine Janner. Temporal dialetics in the narrative of a life with a rare disease. Educ. Rev. [online]. 2021, vol.37, e79272.  Epub Apr 09, 2021. ISSN 1984-0411.  https://doi.org/10.1590/0104-4060.79272.

This article aims to identify the dynamics and temporal dialectical tensions at play in self-narration, narration and the processes of understanding the self and the world that are revealed in the autobiography (DELORY-MOMBERGER, 2014) of the solicited and written by volunteer patients with a rare autoimmune disease: systemic lupus erythematosus and scleroderma. This research called E-Fom Innov (2016-2018), led by Prof. Farge-Bancel, thus gives voice to those concerned, to give voice to their experiences of living with a rare disease, in the wake of Tourette-Turgis (2013) and Flora (2013). It is within the framework of the phenomenology which is inspired by Husserl (1964; 1980), in particular on his dynamic conception of time (PICARD, 2009), the work of Ricoeur (1985; 2005) and of Romano (1999) on the stakes of the time told and of the event that will be examined by the temporal dialectic at work in the first-person narrative. Thus, in the pathologization process from abnormality to disease, we will examine the role (s) of time in self-anxiety, before concluding on a redefinition of taking care (WORMS, 2014).

Keywords : Autobiography; Autopathography; Chronic disease; Experiences; Narrative approaches; Care; Medicine.

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