Being a man with sickle cell disease: discourses about falling ill and self-care

Objective: To understand the experience of masculinity in the illness of men with sickle cell disease and the challenges for self-care. Methods: This descriptive and qualitative study was developed in a reference center for monitoring people with sickle cell disease. Thirteen adult men with sickle cell disease participated, who responded to a drawing story with a theme and a semi-structured interview. Data were analyzed by Collective Subject Discourse. Results: The discourses of men with sickle cell disease were organized into four central ideas: Finding oneself ill, knowing the disease and performing self-care; The limitations imposed by the disease permeate masculinities; Stigma and discrimination add to suffering caused by the disease; Men also feel pain and need to take care of themselves. Conclusion: The hegemonic masculinity model is contradicted by limitations of illness and by learning of self care, promoting the resignification of being a man based on the experience of chronic disease.