“Being Sick Does Not Define You”: Communicated Narrative Sense-Making of Autoimmune Disease in Emerging Adult Women in the U.S.

Abstract

The onset of autoimmune disease (AD) in emerging adulthood is a disruptive illness experience that is difficult to make sense of. Compounded by hegemonic ideologies, including the master illness narrative of restitution and stereotype of the hysterical female patient, women with AD struggle with narrative coherency. Guided by the retrospective storytelling heuristic of communicated narrative sense-making theory (CNSM), the present study investigates the meanings, values, and beliefs found in emerging adult women’s narratives of AD onset and diagnosis. Using qualitative in-depth interviews, findings identify how young women experiencing disruptive chronic illness at a formative age make sense and meaning of their experience, highlighting the role of identity (re)construction and resistance to dominant narratives. Framed as lessons learned, themes include rediscovering trust in self, separating self from illness, creating and committing to new normals, challenging assumptions about illness, and recognizing privilege and disparities in care. Theoretical and practical implications are discussed.