ABSTRACT
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, 2014DELORY-MOMBERGER, Christine. De la recherche biographique. Fondements, méthodes, pratiques. Paris: Téraèdre, 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)TOURETTE-TURGIS, Catherine. L’activité de maintien de soi en vie et son accompagnement: un nouveau champ de recherche en éducation. Habilitation à diriger des recherches, Sciences de l’éducation. Paris: Cnam/Université Paris 13, 2013. and Flora (2013)FLORA, Luigi. Savoirs expérientiels des malades, pratiques collaboratives avec les professionnels de santé: état des lieux. Education permanente, n. 195, p. 59-72, 2013.. It is within the framework of the phenomenology which is inspired by Husserl (1964HUSSERL, Edmund. Leçons pour une conscience intime du temps. Paris: PUF, 1964.; 1980)HUSSERL, Edmund. Méditations cartésiennes. Paris: Vrin, 1980., in particular on his dynamic conception of time (PICARD, 2009PICARD, Yvonne. Le temps chez Husserl et Heidegger. Revue: Philosophie, [s.l.], n. 100, p. 7-37, 2001.), the work of Ricoeur (1985RICOEUR, Paul. Temps et récit. III. Le temps raconté. Pairs: Seuil, 1985.; 2005)RICOEUR, Paul. Anthropologie philosophique. Écrits et conférences 3. Paris: Seuil, 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, 2014WORMS, Frédéric. Penser à quelqu’un. Paris: Flammarion, 2014.).
Keywords:
Autobiography; Autopathography; Chronic disease; Experiences; Narrative approaches; Care; Medicine