Invisible Illness, Contested Legitimacy, and Gaps in Psychosocial Support: Living with Lupus in Albania
Invisible Illness, Contested Legitimacy, and Gaps in Psychosocial Support: Living with Lupus in Albania

Summary/Abstract: Systemic lupus erythematosus (SLE) is a chronic autoimmune condition whose fluctuating and often invisible symptoms can disrupt everyday life. This qualitative exploratory study examined psychosocial experiences of SLE in Albania and professional perspectives on support gaps. Between December 2024 and March 2025, semi-structured interviews were conducted with 15 adults reporting a physician diagnosis of SLE (13 women, 2 men; aged 22–58 years) and four professionals (two rheumatologists, two social workers) in four Albanian cities. Reflexive thematic analysis generated four themes: invisible fatigue and the need to prove illness; stigma, gendered expectations, and social withdrawal; fragmented healthcare relationships and absent psychosocial pathways; and informal coping as both a resource and a response to institutional scarcity. Findings highlight credibility work around invisible symptoms and reliance on informal support where psychosocial pathways are weakly routinised. Implications include psychosocial assessment, explicit referral pathways, patient education, peer support, and stronger health–social-care coordination.

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