Half the Man I Was”: Exploring Accounts of Emasculation and Estrangement amongst British Men Living with Systemic Lupus Erythematosus

Systemic Lupus Erythematosus (SLE) is a chronic, unpredictable, autoimmune condition primarily affecting women. In the current study eight British men recruited through a support organisation, with established SLE, aged 20 to 69 years and from various ethnic backgrounds participated in individual semi-structured interviews. Data were recorded, transcribed and analysed using interpretative phenomenological analysis (IPA). We draw on theorising around ‘marginalised masculinities’ to explore how SLE affects the performance of masculinity in multiple contexts and threatens psychological well-being. Participants described the psychosocial consequences of struggling to fulfil expected obligations as workers, parents and sexual partners whilst navigating a way through interpersonal relationships where the legitimacy of their illness and coping was frequently contested. We argue that more focused, sex-specific strategies need to be developed for individuals with SLE, relevant healthcare professionals and informal caregivers to raise the profile of men with the condition and work towards enhancing their psychological well-being.