Paper short abstract:

This presentation explores different diagnostic-seeking pathways of patients and medical professionals dealing with complex and partially understood medical conditions. Looking for a diagnosis or managing the symptoms are strategies shaped by entangled cultural, moral and social factors.

Paper long abstract:

Medical uncertainty can limit the capacity of biomedicine not only to treat but also to diagnose, explain and recognise illness. This impasse adds to the complexity of how individual experiences of illness are socially and culturally shaped. This presentation explores the role of medical uncertainty in shaping how patients navigate health services. It draws from ongoing research in the UK with patients, clinicians and researchers in relation to four uncertain and complex biomedical conditions: fibromyalgia, ME/CFS, long COVID and chemobrain. Patients and professionals have different approaches to managing medical uncertainty, which include both the offering or seeking of a specific diagnosis or managing a set of symptoms without diagnosis. This analysis highlights how medical uncertainty is embedded in complex health-seeking paths, and often results in a diagnosis by exclusion. In this context, important issues emerge. Patients’ moral and practical preferences might be oriented towards biomedical diagnosis or towards management without diagnosis. Anamnesis has a central role, and cultural differences can extend the variation in the interpretation of anamnesis. The resources needed for health-seeking (financial resources, knowledge, social connections, physical and psychological energy) are unequally distributed, and a diagnosis can be beyond the reach of many. The aim is to discuss how obtaining a diagnosis and the lack thereof does not involve only the social suffering of having an illness that is not fully recognised by the biomedical system (and parts of the wider society) but also moral questions about the usefulness and cost of diagnosis and its linked health-seeking practices.