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UBC Theses and Dissertations

Living well with chronic illness : aligning tensions, attitudes, strategies, and meanings Mills, Susan Lynn


Chronic illnesses have an enormous impact on individuals and society and consume considerable resources. Increasingly, studies have shown that some people have a good life with these long-term conditions despite the economic hardship, pain, suffering, and disability they create. This raises questions about what characterizes these experiences and how they develop in the context of these challenges. In this interpretive study, these issues were explored using the interview data of 27 women and 4 men who self-identified as living well and were diagnosed with multiple sclerosis, scleroderma, or lupus. The findings revealed that the participants had diverse and challenging lives and experienced disease-related tensions and losses in daily life. In this context, living well represented meaningful experiences that evolved over time in relation to the tensions and losses they experienced and their understandings of what was valuable. Meaningful experiences were obtained through attitudinal and behavioural strategies as well as cognitive shifts in understanding that aligned their tension-centred realities with what was important in life. Within this process, the women and men made decisions and choices about how to live in relation to their goals and values rather than in relation to just managing, coping, or adapting to the illness. The meaningful experiences associated with living well varied over the course of living with illness and positive emotions about life and illness were associated with having these experiences. By interpreting the data in relation to the interrelated conceptualizations of tensions, meanings, and alignment, some patterns and themes were illuminated that help to extend current knowledge of the nature and dynamic processes involved in living a good life with illness. Also, the angle of vision taken in interpreting their experiences created a framework within which we can better understand some of the complexities inherent in this kind of illness experience and make sense of some of the competing ideas and contradictions that are found within existing bodies of knowledge. The overall value of the research comes from looking at the phenomenon of chronic illness from a perspective of truly living well rather than one of coping or managing disease.

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