Research Student: Tiffany Boulton
Understanding “Contested” Chronic Illness: A Case Study of the In/Visibility of Fibromyalgia Syndrome (FMS) in the UK and Canada
The research project examines the individual, collective and institutional practices that make “contested” chronic illnesses socially invisible and visible in Western society. Drawing on a case study of Fibromyalgia Syndrome (FMS) in the UK and Canada, the project will provide an original framework for looking at how one particular contested illness is made in/visible by various actors in different social spaces. Specifically, the framework of in/visibility will allow for an examination of when, where, how and why the condition is made invisible and visible by different actors in various social contexts. In so doing, the research will provide insight into the identity management strategies of people with FMS as the research will examine when, where, how, why and to whom people with FMS reveal/conceal their illness. In addition, the project will explore the social responses of family, friends, colleagues, health practitioners, policy-makers and “others” who through their individual and collective practices deny or acknowledge the condition. Thus, the framework of in/visibility will allow for an examination of the micro-level practices that make FMS in/visible, such as the discrediting or affirming reactions of family and friends, as well as the macro-level practices that contribute to the in/visibility of FMS, such as the denial or recognition of FMS as a legitimate illness within biomedicine, public policy and healthcare services. Finally, the research project will consider how embodied and social dimensions of identity, such as age, class, gender, ethnicity, sexuality and disability, might contribute to the in/visibility of FMS. Given that FMS is regarded as a “women’s condition,” and has been described as an “invisible disability,” it is likely that gender and disability will be particularly important dimensions to be considered in this project.