My first years with lupus: A point of view from the experience of a young woman

Abstract

IntroductionSystemic lupus erythematosus (SLE) is a chronic autoimmune disease of a fluctuating nature and diverse symptomatology, which represents a high impact on physical health, psychological well-being, and social dynamics of those who suffer from it. In young people, the onset of chronic diseases interferes with the life project, so its confrontation is lived as a complex process, especially during the first years of diagnosis. ObjectiveDescribe the life experience of a young woman with a recent diagnosis of SLE. Materials and methodsResearch was developed with qualitative approach of a descriptive phenomenological type, following the fundamentals of Husserl and the methodology of Colaizzi. Five in-depth interviews were conducted between June and December 2019 to 5 young women with recent diagnosis of SLE (< 3 years). Results268 significant statements and 22 nominal codes gave rise to the 4 categories describing the phenomenon: “my youth with lupus”,“a reality that transforms itself”, “living lupus through ties” and “in search of tranquility”. ConclusionThe experience of the young woman with a recent diagnosis of SLE is influenced by internal and external factors, implies a complete modification in her life dynamics and, although it leads to multiple difficulties, it also represents gains and opportunities for her. The results of this study demonstrate the need for a comprehensive and humanized health approach, where attention to physical manifestations is accompanied by psychological care and social support.