The exploration of patient-doctor relationships, social support, and symptom invisibility among women with lupus: a qualitative study

Systemic lupus erythematosus (SLE), or lupus, is a rare autoimmune disease in which the antibodies that are formed in the body attack healthy tissues and organs. The most prevalent physical manifestation of the illness is fatigue. Fatigue often plagues patients with no warning and without leaving a trace of measurable evidence. The issue of fatigue’s invisibility and the difficulties of communicating the experience of fatigue has been shown to impact relationships with friends, family, and physicians. It is important for patients to understand their condition in order to better identify their own triggers, manage their condition, and communicate their symptoms to friends, families, and other medical professionals. The study sought to explore the lived experience of women who have lupus, describe the impact of symptom invisibility on social support and patient-doctor relationships, identify effective strategies in communicating and managing the condition, and describe the broad range of life changes associated with the disease. The study utilized in-depth, semi-structured interviews to gather detailed information from eleven women with lupus. Six overarching themes emerged from the data: difficulties with diagnosis, discovering lupus is a process, managing lupus, social impact of lupus, communicating the experience, and limitations of the healthcare system. Symptom invisibility was not frequently cited as the cause of any interpersonal problems faced by the participants. Rather, the results suggest that the current healthcare system in the United States may not be equipped to adequately care for patients with lupus. This study provides insight for recommendations to patients with lupus and may inform cultural and policy changes necessary to improve healthcare delivery.