"Punishment for my Sins," "Diet Pepsi," or "Bad Gene:" Perceived Causes of Autoimmune Diseases

Abstract

Autoimmune diseases are the fourth most common type of chronic illness yet the medical causes of the diseases remain largely unknown. Individuals who are diagnosed with autoimmune diseases often face many psychosocial consequences as a result of their disease including feelings of isolation, stress coping with the cycles of relapse and remission, lengthy and ambiguous diagnosis processes, anxiety, and depression. The current study was part of a larger mixed-methods study that included online surveys assessing disease severity, depression, self-efficacy, social support, positive well-being, and health promoting behaviors. Participants also completed open-ended questions asking, "What do you think caused your autoimmune disease?" and "Have you been given a medical explanation for the cause of your disease?" Participants included 175 individuals with connective tissue or musculoskeletal autoimmune diseases and ranged in age from 18-84 years old. The most common diagnoses were rheumatoid arthritis, multiple sclerosis, systematic lupus erythematosus, and myositis. A content analysis of the open-ended questions revealed that many participants were unsure why they were diagnosed with an autoimmune disease. Participants who had received a medical reason for their diagnosis often expressed a personal belief that was different from what they were told by their doctors. In addition, some participants blamed themselves for the etiology of their disease, even when that belief was contradictory to the medical information they had received. Lifestyle choices like drinking diet pepsi or working too hard were cited as reasons. The most common explanations were genes, environmental causes, bacterial or viral causes, medications like statins, stress, and pregnancy.