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Social Construction of Chronic Disease: Narratives on the Experience of Chronic Illness
Abstract
In this study of narratives in relation to chronic illness, a number of themes relevant to patients were identified from the literature for discussion and analysis. Themes included responsibility and control of chronic illness, stigma and non-legitimation. Discussions and blogs on the Internet were identified and examined representing patient experiences of chronic illness. For some patients taking responsibility for their chronic illness conflicted with some of their important life roles. There were also questions about the degree to which people who already manage busy lives should also be managing their disease. It was found that some patients experience control over their illness and behaviour as a difficulty they faced with a chronic condition. This included being placed on a regimen and reviewed for compliance. Some referred to the experience as policing. Patients who reported some greater difficulties were those with illnesses which struggled to achieve legitimacy through medical means. Their illness experience and outcomes were largely dependent on seeking out sympathetic medical practitioners. Overall the authors conclude that notwithstanding the benefits of self management programs for patients, the uncertainty surrounding chronic illness creates problems for patients and reinforces the importance of having effective and trusting relationships with their health care providers. A typical biomedical perspective on illness tends to focus on disease and its causes without considering the social world within which health and illness occur, and the way in which social forces shape these concepts and experiences. Sociologists and some progressive medical practitioner researchers are concerned with social process and with the effect of factors such as gender relations, social class and the broader political economy on understanding the experience and prevalence of disease. The aim of this chapter is to present some narratives by patients, consumers, medical and health practitioners, and other stakeholders in blogs, discussions and forums on the Internet. This chapter looks at a number of aspects of chronic illness that have been identified in a range of studies, from aspects of responsibility of patients and control processes on chronic illness patients through to non-legitimate and resistance themes.
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