Understanding the lived experiences of people with myasthenia gravis: a narrative-based study
Date
2022-04
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Abstract
Myasthenia gravis (MG) is a neuromuscular disease that is well-studied from a clinical perspective, but research often excludes the perspectives of people with MG. This study explored the lived experience of MG with two specific aims: 1) to investigate how people with MG narrate their lived experiences, and 2) to explore how narratives of lived experience may disrupt and/or reinforce common clinical narratives of MG and their reproduction. Utilizing a critical disability studies framework, the study specifically investigated how participants internalized or resisted ableism in the telling of their stories. Informed by narrative inquiry methodology, unstructured interviews were used to co-create a narrative with four participants. Each narrative highlighted a unique experience of MG, where participants spoke of dealing with the rarity of the disorder, feelings about worthiness and value, challenges while managing social relationships, and navigating ongoing uncertainty inherent to the experience of MG. People tended to tell their stories based on dominant understandings of disability and illness; where disability is an individual problem to be overcome. These narratives describe the lived experience of people with MG beyond a symptomatic or clinical perspective, using critical disability studies to account for the social and political contexts in which these narratives are located.
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Keywords
myasthenia gravis, critical disability studies, narrative, lived experience, qualitative
Citation
Crooks, R. (2022). Understanding the lived experiences of people with myasthenia gravis: a narrative-based study (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.