RITTI SONCCO

THESIS ABSTRACT

This thesis shows the importance of understanding the experiences of people living with chronic Lyme disease in Scotland, and the influence that this contested illness has on their relationships with doctors, advocates, and researchers. Chronic Lyme disease is a contested illness within medical guidelines and NHS Scotland because it is currently unclear whether it is a real disease. Patients and doctors working to prove that chronic Lyme disease is real organise their advocacy groups under the banner “Lyme-literacy” and call for more medical research on improving diagnostic tools, on the benefits of treating chronic Lyme with long-term antibiotics, and on the theory that the responsible bacteria can survive antibiotic treatment. However, my research found that the participation of Lyme patients in these advocacy groups also has problematic consequences. In medical anthropology, advocacy groups are normally researched on how they create feelings of belonging, family, reciprocity, political change, and safety. I argue that while this is certainly true of the groups in Scotland, they also importantly experience anger, frustration, and lack of solidarity. While previous research on the anthropological concepts of biosociality and biosolidarity have discussed other fragilities of advocacy groups, this research offers new perspectives on this topic. 

This research is based on 12 months of in-depth fieldwork across multiple sites in Scotland and online. I offer an account of what living with chronic Lyme disease is like, paying particular attention to people’s dual identities as patients and as advocates. By focusing on patient experiences, I describe the fragility and limits to advocacy work and the friction between medical and Lyme-literate information. I also interviewed clinical scientists, infectious disease researchers, epidemiologists, and advocates researching and treating chronic Lyme, and discuss why, even though they share the common goal of understanding what chronic Lyme disease is, they do not feel heard by one another. I also attended public health meetings, Parliamentary hearings, conferences, and patient advocacy gatherings, and this thesis explains how these different groups define chronic Lyme disease and what questions are raised by these different definitions, e.g.: are the diagnostic tools efficient or not? Are the medical guidelines outdated? Should healthcare include long-term antibiotics? What are the roles of private economies in healthcare? When is a person “healed” and when are they “still sick”? Who is the expert: the patient or the doctor? Patients and advocates challenge medical expertise by deciding who may call themselves a Lyme-literate doctor. These in turn engage with their patients in experiments with long-term antibiotics, which within the Lyme-literate community is thought of as pioneer work. However, to the wider medical community, this is considered non-medical and unethical. How patients, doctors, advocates, and researchers handle this friction tells us how contested illnesses challenge medical knowledge, and tells us about 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 experiences of medical doctors and Lyme-literate doctors as they research 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 three 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 from 2019 to 2020, the COVID-19 pandemic appears 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 illnesses and navigating ongoing anxieties of infectious diseases.