From diagnosis to complications: experiences of those who live with systemic lupus erythematosus

Abstract

Objective: To understand how people with lupus experience the diagnosis and how they deal with complications arising from the disease. Method: Qualitative study, whose data were collected between February and July 2019, through semi-structured interviews with 26 individuals and submitted to content analysis. Results: Three categories emerged that show illness from lupus as a difficult experience, permeated by sadness, fear and suffering, which, in addition to being linked to society’s lack of knowledge about the disease, negatively impacts the lives of those who experience it. Furthermore, they show that the time of living with the disease favors the development of self-care strategies and greater therapeutic adherence and, consequently, longer periods of disease remission. Considerations: More disclosure about the disease and its implications in the daily lives of those affected is essential, culminating in greater understanding of family, friends and colleagues and improvements in health care and quality of life for these people.

Case series: raw, whole, plant-based nutrition protocol rapidly reverses symptoms in three women with systemic lupus erythematosus and Sjögren’s syndrome

“…Despite the fact that life expectancy is generally favorable ( 41 , 42 ), racial and ethnic minority groups experience more severe outcomes ( 43 ), and SLE can dramatically affect all areas of a patient’s life, including physical health, mental health, and social relationships ( 44 ). Recent research has highlighted poor physical and mental health related quality of life in patients with SLE, with literature indicating that SLE can cause pain and fatigue ( 45 , 46 ), poor sleep quality ( 47 ), feelings of fear, anguish, and social exclusion ( 48 ), decreased sexual function ( 49 ), concerns around fertility and reproductive health in women ( 50 ), and challenges around economic costs, status, and employment ( 51 ). In addition, quality of life may be affected differently at different phases of disease ( 52 ).…”