Paper short abstract:

This performance dialogue combines ethnographic data collection with storytelling and advocacy practises to explore how Lyme disease, a historically invisible epidemic, can be made visible, and the patient epistemologies, medical knowledge, and social rendering this method reveals.

Paper long abstract:

Caused by the Borrelia burgdorferi bacteria and spread across Europe by ticks, the Lyme disease epidemic has remained a historically invisible event. However as its international visibility grows, debates continue to center on its contested nature: the tensions of medical knowledge production around diagnosis and whether a chronic form exists. In Scotland, patients and patient advocates striving for the recognition of a chronic form of the illness, adopt traditional medical epistemologies by learning the language of doctors so that they and their illness are not discredited. As a result, patient epistemologies of chronicity are well-known within patient communities but remain unknown to medical, social, and economic spaces: the body dysmorphia, suicidal thoughts, PTSD, hypervigilance, loss of social circles, changing relationships to nature, and the late-night conversations with a predatory more-than-human Other.

This presentation is a performance dialogue between Scottish author, patient and advocate Morven-May MacCallum and medical anthropologist and performer Ritti Soncco. We weave Soncco's 15 months of data collection across Scotland using traditional ethnographic methods with MacCallum's advocacy and storytelling practises, including her two semi-autobiographical novels "Finding Joy" (2017) and "Keeping Joy" (2023). Part presentation, part performance, we question and push with the boundaries between our work to explore how transdisciplinary methods can change how we have historically spoken about Lyme disease and how they make a historically invisible epidemic visible - but, importantly, the personal stories and the medical knowledge that are lost when we don't employ wider transdisciplinary methods.