Navigating uncertainty: Experience of individuals living with systemic lupus erythematosus

Systemic Lupus Erythematosus (SLE) has the potential to impact the individual’s physical, psychological, and social health. The study aimed to explore the experience of individuals living with SLE in Nepal. This study adopted Husserl’s descriptive phenomenology. In-depth semi-structured interviews were conducted with 12 purposively recruited participants from two organizations in Nepal. Data were analyzed using Colaizzi’s method of data analysis. The Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines were used to report the findings of this study. The experience of individuals with SLE unfolded as a prolonged journey marked by diagnostic uncertainty. Participants encountered misdiagnosis, delayed recognition, and the unfamiliarity of a new diagnosis. What followed was an emotional turmoil of initial psychological distress, altered body image, social insensitivity, and self-blame. Daily life was often experienced as fragmented, with disruptions to career trajectories, fertility, and motherhood, as well as frequent flare-ups and a compromised social life. Driven by limited medical literacy, inadequate guidance, and financial strain, a persistent sense of vulnerability emerged. Yet, participants articulated resilience through cognitive and behavioral restructuring, self-regulation, adherence to treatment, and reliance on supportive anchors. Living with SLE is a demanding and multifaceted experience for individuals in Nepal requiring systemic reforms. Strengthening local diagnostic infrastructure, expanding rheumatology services, and streamlining referral pathways in Nepal alongside patient education, provider training, and counseling are vital for cultivating positive experiences. To reduce the burden and empower individuals living with SLE in Nepal, greater public awareness, government subsidies, inclusive health policies, and patient‑centered approaches, and a strong social network are needed.