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Paper short abstract

We discuss how mistrust between medics, patients, advocates, politicians, and tourism dismantles the binary of opposition and reveals possibilities for collaboration in chronic Lyme disease.

Paper long abstract

This joint presentation is by Ritti Soncco (medical anthropologist) and Morven-May MacCallum (author and Lyme disease advocate).

In Scotland, chronic Lyme disease remains a contested illness (Dumes, 2020), a stigmatised illness which remains unaccepted by the National Health Service. As chronic Lyme patients provide care for one another through patient support groups that reproduce biosociality and kinship, “biosocial fragilities” (Soncco, 2023) also reveals that carework often means emotional labour; mental, physical and financial reprecussions; and ultimately being excluded from care itself. The ensuing mistrust within patient groups reveals that being on the same side does not always mean collaboration.

We then explore further instances of mistrust - the failure of political petitions, the tension in medical knowledge, the construction of Scottish landscapes for tourism - and the collaborations born herein. We argue that mistrust in politics, knowledge production, and tourism dismantles binary tropes such as the “Lyme wars”, and reveals that being on opposing sides doesn’t exclude collaboration; and being on the same side doesn’t guarantee heterogeneity.

Our paper is a performance between two backgrounds: 16 months of multi-sited ethnographic research (Ritti Soncco) and 10 years of advocacy work as the face of chronic Lyme disease in Scotland (Morven-May MacCallum). We weave traditional ethnographic data collection (Ritti Soncco) with MacCallum's two semi-autobiographic novels "Finding Joy" (2017) and "Keeping Joy" (2023) and her storytelling practises into a performance dialogue that grew out of a provocative and productive mistrust between researcher and participant.