Autoimmunity, identity, and moralisation: caring for women with autoimmune diseases in regional Australia

Autoimmunity, identity, and moralisation: caring for women with autoimmune diseases in regional Australia

Autoimmune diseases (ADs) affect 1 in 20 Australians and an estimated 324,694 people in regional Australia. Women account for almost 75% of these cases. ADs create a range of challenges for women across their lifetimes, particularly since they are unpredictable, characterised by periods of remission and flare. In addition to the physical realities of ADs, women must also navigate challenges to their identities and the way health, illness, and identities are moralised. Despite recognition that chronic illnesses can be more difficult to manage in regional areas compared to metropolitan areas, little is known about the specific care needs and experiences of women with ADs in regional Australia. Thus, this thesis aims to understand the care needs and experiences of women with ADs in regional Australia through an exploration of the relationships between autoimmunity, identity, and moralisation.

Fieldwork was conducted from June 2017 to June 2018 in regional Queensland. Using a life story approach to ethnography, fifty-five in-depth interviews were conducted with seven women with ADs across this period. All participants came from Anglo-Australian backgrounds, with ages ranging from 26-80. Interviews were analysed thematically, with attention given to privileging women's voices and stories during analysis and interpretation.

Through these analyses, three common illness phases were identified. These include the process of getting a diagnosis, negotiating care after a diagnosis, and making sense of autoimmunity. Women's diagnosis periods were characterised by disconnected care and the denial of care based on the moral judgments of healthcare providers. These prolonged diagnosis and affected women's sense of self and identity. Women were also sometimes complicit in this, avoiding care in order to maintain socially valued identities. Diagnosis periods were characterised by ambiguity and uncertainty, with women coping by engaging in activities that protected or reinforced their identities as productive and active people, even at the expense of their health.

After receiving a diagnosis, women's experiences were characterised by attempts to create new identities and mitigate the impact of chronic illness on existing identities, in addition to accessing effective treatment, peer support, and practical and financial support. While diagnoses are typically considered gateways to these forms of care, this was not always the experience of the women in this study. Many faced barriers to accessing the care they needed. In response, women enacted agency in various ways, absorbing their illness identities into their existing identities, creating new illness identities, and fighting for access to financial support. In each of these cases, however, the agency women enacted was shaped by a desire to maintain identities that are positively moralised, and thus socially valued, regardless of how this might impact their health.

In the third phase, women attempted to understand and make sense of autoimmunity. This can be difficult since there is continued biomedical uncertainty about the cause of autoimmunity. However, this uncertainty gave women space to develop their own understandings of autoimmunity that made sense in the context of their life stories. In doing so, women often developed multiple, overlapping understandings of autoimmunity to counteract the moralisation they faced and integrate their illnesses into their identities and life stories. These understandings centered around several common explanations for autoimmunity, including stress, environmental causes, and heredity.

Understanding the care experiences of women with ADs in regional Australia through a lens of identity and moralisation has important implications for the care of those with ADs in these areas, as well as those with chronic illnesses more broadly. Care in regional Australia tends to be tightly bound to specific diagnoses. While diagnosis-specific care is important, rethinking the dependency of care on diagnosis would facilitate better access to care for women with diagnosed and undiagnosed ADs. This is particularly important in regional, rural, and remote areas where disease-specific care for ADs is typically unavailable, but also transcends geographic boundaries, with improved access to care also possible for those with poorly understood or rare illnesses. Care should focus on needs in response to illness, rather than diagnosis, which requires a more equitable understanding of what counts as care and who is considered deserving of care.

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