Invisible Chronic Illness and Identity: A Personal and Theoretic Exploration Recognizing the Personhood of the Patient and Opening Space Between the Binary of Sickness and Health
Invisible Chronic Illness and Identity: A Personal and Theoretic Exploration Recognizing the Personhood of the Patient and Opening Space Between the Binary of Sickness and Health
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Issue Date
2016-09-01
Authors
Romei, Mariah
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Abstract
Although important in gaining access to resources and treatment, knowing a diagnosis and using medical language to describe bodily experiences is limited. In order to understand the experience of illness, people with illnesses must be consulted and heard. This thesis is an autoethnographic account of my illness journey. After being diagnosed with Crohn's disease at age nine I began my journey as a patient in the medical system. This experience, combined with my healthy appearance in social settings, created a complex and often oxymoronic identity. In the medical spaces I was viewed as an ill body, not a person. In contrast, in social spaces my health appearance created challenges in gaining recognition and resources for support. After exploring my experiences in medical and social spaces, I presented a period of time in which my health forced me to re-evaluate my identity. Finally, this thesis presented collaborative ways to engage with people who have illnesses. Narrative, Collaborative, and Response-Based therapies are presented as alternative ways to engage with people. These therapeutic models privilege the lived experiences of people and open space between the binary of sickness and health. By opening this space, the complexities of life are brought forth and honoured.
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Keywords
autoethnography , Crohn's disease , chronic illness , therapeutic models