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The purpose of this essay is to explore my experiences with naming my chronic illnesses (Crohn’s disease and rheumatoid arthritis) in two ways: getting a diagnosis and eventually naming them as a disability. These two naming processes were very different and had unique consequences for the way that I perceived myself and my experiences. My diagnosis was clear but left me feeling ashamed and isolated, while the process of naming disability is complex, ever-changing, and has given me a sense of community and belonging. I explore the value and shortcomings of both naming processes, as well as others’ perceptions of these names and their beliefs about which I should embrace. I attempt to better understand the relationship between the medical and social models of disability and explore the complexities of naming in the context of difficult and painful experiences while appreciating the positive aspects of my experience with chronic illness and disability. In writing this essay, I hope to better understand my own experience while providing a narrative to add to the vast number of unique experiences of the chronic illness and disability community.
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Claire Burdick (2022) studied this question.
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