‘It's as if PBC didn’t exist’: The illness experience of women affected by primary biliary cirrhosis

Abstract

This study investigates the illness experience of women who are affected by primary biliary cirrhosis (PBC), a rare chronic liver disease which mostly affects women. Despite the fact that PBC is medically recognised, it shares many characteristics with other chronic and controversial conditions which may lead to delegitimation of the patient's experience of illness, impacting on the construction of the patient's self-identity. Twenty three women took part in semi-structured interviews. Data were analysed using interpretative phenomenological analysis and the analysis identified three themes that are interrelated and characterised by a dynamic of normalisation. The first theme, the delegitimation of women's experience, implies denial of patients’ sick-role, trivialisation of fatigue and lack of consideration of patients’ needs. The second theme, PBC as a challenge to women's social identity refers to how patients face delegitimation and manage the illness's consequences for relationships and social roles. The third theme, the need for biographical continuity, focuses on how patients construct their ill identities as a consequence of both the delegitimation and the challenges posed by PBC. Results are discussed in a gender perspective, highlighting how delegitimation and identity construction processes are influenced by women's social roles and conditions.

Keywords:

• primary biliary cirrhosis
• illness experience
• delegitimation
• fatigue
• interpretative phenomenological analysis
• gender roles