“Can you bury him before he dies?” Sickle cell disease and social sites of suffering in Malawi and Uganda

In health-related research, experience of illness is commonly characterised by its physical signs and symptoms. However, the experience of illness also extends past the patients' bodily aches and ailments to influence, and possibly impair, their social interactions. Despite its relational ramifications, the field of medicine has not awarded enough attention towards social dimensions of suffering nor the ways in which chronic disease may change and constrain the tapestries of social life. During everyday encounters, ill individuals are often subjected to the objectifying, evaluative gaze of healthy onlookers, who view them from a detached, third-person perspective. This paper explores interpretations of illness in the context of the genetic blood disorder sickle cell disease in Uganda and Malawi. 11 focus group discussions were held with children above 10 years of age with sickle cell disease, while 18 discussions were performed with caregivers of children with sickle cell disease. Drawing on this data, we describe how social interplay between sickle cell ‘sufferers’, their caregivers, and surrounding ‘spectators’ was coloured by community discourses on death, misconceptions about contagiousness, and attribution of perceived deviance. Beyond clinical features of pain and pathology, sickle cell suffering would take on socially situated forms where the ideas and imageries of ‘observing others’ led to added agony and alienation among affected individuals and their intimates. When addressing the predicament of patients and their families, one should consider how the medical meaning-making and opinions of others may give rise to what we herein refer to as ‘social sites of suffering’. • Sickle cell disease is a blood disorder affecting millions of people. • This paper explores illness perceptions in the context of sickle cell disease. • Focus group discussions were held in communities of Malawi and Uganda. • Community discourses on death, deviance and perceived contagion were identified. • The experience of chronic illness may entail socially situated forms of suffering.