Paper short abstract:

Taking responsibility for diabetes takes many forms including accepting blame, not telling the truth about management, and trying alternative ways of management not accepted by biomedical providers in the face of challenges of costs and uncertainties.

Paper long abstract:

Globally, biomedical management of non-communicable diseases including diabetes is often framed as an individual responsibility to self-manage it through compliance with diet, physical activity and taking medicine as prescribed. However, research often shows that patients' practices diverge from what is asked of them. This paper is based on twelve months of ethnographic fieldwork which sought to understand how patients, their caregivers and health care workers at two diabetes clinics in Malawi live with and manage diabetes. In-depth interviews and participant observation during diabetes education and clinic consultations reveal that patients are asked to take responsibility for diabetes by following advice from health care workers and not engaging in practices outside this advice. To instil this responsibility, health care workers use a moral language that blames patients for high sugar levels, invoke the gaze of both health care workers and God, and emphasize the negative consequences of not complying with biomedical advice. Some patients accept this blame: admitting their 'negligence', 'greed' 'childishness' or 'carelessness'. Alternatively, for fear of infuriating their doctors, some patients take 'responsibility' of diabetes by resorting to lying or not telling the truth about their management practices. This complicates biomedical management of diabetes which, in part, depends on patients disclosing how they have been following diabetes advice. Taking responsibility also involves 'trying' and 'trying harder' to ensure a 'normal' sugar level. However, 'negligence', 'greed' and 'mistakes' emanate from competing responsibilities to follow biomedical advice in the face of costs of food, transport and medicine and its perceived uncertainties.