The structure of the “lived-experience”: analysis of reports from women with systemic lupus erythematosus

Objective: To investigate how systemic lupus erythematosus (SLE) has changed the lives of affected women and their reports on how this condition has affected them.

Method: Interviews were performed in accordance with the qualitative study method of Amatuzzi and the answers were recorded.

Results: Patients have reported that it is difficult to deal with this disease, their lives have changed, in particular their body image, as a result of treatment side effects. The lack of familiarity of other people with the disease brings several consequences such as discrimination, difficulties in obtaining a job and changes in their interpersonal relationships. Treatment compliance is often maintained due to the fear related to the unpredictable disease course. The imminence of a possible lupus flare can cause anxiety and fear, imposing limits to their lives. Since the disease has no regular course, it is perceived as a threat to their existence and, consequently, they feel persecuted by a death threat.

Conclusions: Psychological manifestations related to the disease based on patients’ reports are discussed, together with the importance of multi-professional assistance, highlighting the role of the mental health professional as an essential tool to reach an overall understanding and adequate treatment for patients with SLE