Contested Illnesses: An Exploration of Experience and Understanding

Abstract

Contested Illnesses (CIs) are illnesses without determinable aetiology. Despite diverse symptomologies, CIs share limited therapeutic avenues, indeterminate diagnostic protocols, and contestation over the legitimacy of the illness. This thesis explores the lived experiences of virtual symbolic community (VSC) members with myalgic encephalomyelitis (ME), fibromyalgia (FM) and morgellons disease (MD), focusing on how VSC use impacts CI patients. This research is the first sociological investigation of MD from the patient perspective and expands existing scholarship on ME and FM. It examines the applicability of epistemic injustice – a concept that addresses the inequality among possessors and wielders of knowledge – to the CI patient experience, uncertainty, and previously undiscussed forms of knowledge production. Utilising online ethnographic and semi-structured interviews, this research provides an in-depth analysis of the lived experiences of individuals with ME, FM, and MD, the influence of VSC community cultures on CI patients, and the benefits and drawbacks of VSC participation. The analysis highlights the significance of experiences of uncertainty within medical, social, psychological, future, and moral domains. Applying epistemic injustice to the CI context reveals the impact of testimonial and hermeneutical injustices, which obscure personal understanding and limit positive health outcomes. VSCs play a crucial role in creating and exchanging knowledge and unlearning processes, providing members with valuable resources for navigating their illness journey. Finally, this research underscores the importance of VSCs in supporting CI patients, highlights the drawbacks of VSC participation, and contributes to the broader discourse on patient experiences and online health communities. The collective findings illuminate the application of a final theoretical insight, to what extent ME, FM, and MD are medicalised on the three interlinked levels, and what this insight may tell us about CIs more broadly. <br/