Biosocial fragiities: life with chronic Lyme disease in Scotland

Abstract

This thesis explores patient experiences in the controversy of chronic Lyme disease in Scotland, and the importance of social relationships between patients, doctors, advocates, and researchers as these groups navigate the controversy. Chronic Lyme disease is a contested illness; its existence is disputed by biomedical guidelines and NHS Scotland. Patients and doctors seeking to legitimise chronic Lyme organise under the banner of “Lyme-literacy” and argue for medical research on diagnostic tools, long-term antibiotic treatment, and bacterial persistence. This thesis also introduces the concept “biosocial fragilities” which I define as the fragilities inherent to the labour of producing biosocial spaces. Where biosociality and biosolidarity explore the empowerment, joy, and kinship of this labour, biosocial fragilities explores what it means when this labour is carried out by chronically-ill persons; the irony of biosociality and biosolidarity being dependent on vulnerable peoples’ health; and the ways in which this makes biosociality fragile. Biosocial fragilities furthermore explores how and why the biosociality and biosolidarity produced by advocates does not always extend to them, thereby placing them in a further fragility. This thesis offers new perspectives to the medical anthropological literature on biosociality and biosolidarity in the form of biosocial fragilities.

Ethnographic fieldwork was conducted over a period of 12 months across multiple sites in Scotland and online. I offer an in-depth account of what living with chronic Lyme disease is like, paying particular attention to people’s dual identities as patients and as advocates. By centering the patient experience, I describe the fragility and limits of advocacy work and the tension between biomedical and Lyme-literate knowledge. Furthermore, I describe clinical scientists, infectious disease researchers, epidemiologists, and advocates researching and treating chronic Lyme, their common goal of understanding what chronic Lyme is, and unpack why, despite this shared goal, they do not feel heard by one another. By attending public health meetings, Parliamentary hearings, conferences, and patient advocacy gatherings, I trace how chronic Lyme disease is understood and how the meaning given to it challenges whether diagnostic tools are efficient or in fact inefficient; whether medical knowledge and guidelines are outdated; if healthcare should include long-term antibiotics; the role of private economies in healthcare; what constitutes healed and what constitutes ongoing illness; and who the expert is, the patient or the doctor. Patients and advocates dismantle biomedical hierarchies that determine who may call themselves a Lyme-literate expert; Lyme-literate medics engage with their patients in experiments with long-term antibiotics. Within this community, Lyme-literate medicine is described as pioneer work. However, to the biomedical community, it is considered non-medical and unethical. How patients, doctors, advocates and researchers approach this question reveals the tension between contested illness and biomedical knowledge, and patients’ ideas of responsibility, care, power, and expertise.

Three themes can be found throughout this thesis. One is patient experiences of living with a contested illness. The second is the experience of biomedical doctors and Lyme-literate doctors researching Lyme disease, tick-borne diseases, and chronic Lyme disease. The third is advocates’ experiences with political campaigns and the patient community. The overall analytical argument of my thesis uses these themes to undercut the idea of binary medical camps standing in opposition to one another, to instead demonstrate the people who move between them, how they seek collaborations with one another, and how alliances change. Furthermore, as my fieldwork year took place in 2019 to 2020, the COVID-19 pandemic makes an appearance throughout the thesis, demonstrating how one disease can overshadow another, the impact of the pandemic on existing disease research, and offers notes of comparison between the socio-political consequences of the two. My work thereby highlights crip emotional intelligence for how it prepared chronic Lyme patients for the COVID-19 pandemic, and suggests it as an important guide for learning from people living with contested illness and navigating ongoing anxieties of infectious diseases.