Living with a Rare Disease

An Analysis of Narratives from Individuals Living with Systemic Sclerosis (SSc)

Abstract

This study analyzes the narratives of people living with systemic sclerosis, a government-designated intractable disease in Japan, to examine how they narrate illness and reconstruct life within biomedical, institutional, and social frameworks. Using Rabinow’s biosociality, Rose’s biological citizenship, and Mol’s logic of care, the study draws on posts from an anonymous online peer support forum. Findings show that antibody profiles and skin scores served as the basis for forming collective identities and digital biosocial ties. Participants used this knowledge to adjust treatment and daily life, enacting informational and digital biocitizenship, concretizing Rose’s "somatic individual." Simultaneously, narratives revealed hesitation, relational dependence, and care practices that exceeded optimization. Peer interactions functioned as spaces of mutual adjustment and emotional acknowledgment. Integrating biosociality and the logic of care highlights life with systemic sclerosis as a continual reconfiguration of everyday living, instead of mere disease management.