Comparing access: Health care structures and women with chronic pain illness in the United States and the United Kingdom

This dissertation examines the role of institutional structures in the experience and outcome of one contested chronic illness, Fibromyalgia Syndrome (FM), for women in the United States and the United Kingdom. Based on 12 months of research in northern California and five months of intermittent research in London spaced out over eight months, my research shows that key distinctions in the organization and underlying ideologies of health care delivery systems and systems for awarding disability benefits had profound and far-reaching effects for FM sufferers. I argue that FM sufferers in the United States and the United Kingdom negotiated fundamentally different ideological and practical landscapes for getting their health care and supporting themselves, the result of which left women with FM in the United States in a place of greater vulnerability, in terms of health, financial status, and relationships, relative to their UK counterparts.;Situating my research in the context of the neoliberal historical moment, I show how market-driven health care for purchase in the United States frequently left many sufferers with unreliable and inadequate access to care, while at the same time compromising their ability to financially support themselves. A difficult to access system for disability support left many in the United States cut off from a potential source of health insurance (through Medicare) and support due to ineligibility, inability to apply, or lack of funds to hire a lawyer. In the United Kingdom, I show how the welfare state offered significant, if imperfect, protection to FM sufferers through guaranteed free health care and comparatively more access to better disability benefits.;I trace how the implications of differences in access to care and access to basic living support radiated outward into the everyday lives of FM sufferers and altered their illness experiences and outcomes. One crucial factor was the meaning of FM itself as a diagnostic label. In both field locations, the FM patient support group was an important space outside the clinic where the meaning of the FM diagnosis was defined and redefined collectively by sufferers. However, I show how in the United States the politicized nature FM's diagnostic status made a contested label like FM a liability for getting care and financial support. Due to the nature of the health care and disability systems in the UK, the diagnostic label was less important and the FM label in particular was less likely to damage sufferers' access to care and support. I further argue that US sufferers, with more contingent and precarious access to care, were more vulnerable to neoliberal policy trends towards self-care and blame for illness; as in one example where behavioral medicine, in the form of illness-education classes, replaced access to specialists.;Finally, I consider how health care and disability structures contributed differently in the United States and the United Kingdom to the relationship between FM and gender: both in terms of FM's association as a "woman's illness" and individual sufferers' gendered family roles. I show how lack of access, or threatened lack of access, to health care and basic living support left US women more likely to be dependent on husbands and boyfriends, and profoundly impacted their experience of illness. I argue that the comparative stability that UK sufferers enjoyed in terms of their access to health care and financial support was a key factor in one UK woman's ability to alter the course of her illness and reclaim a conception of her self not determined by FM.