Roach, PamelaHaines-Saah, RebeccaCrooks, Rachel2022-05-042022-05-042022-04Crooks, 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.http://hdl.handle.net/1880/114615Myasthenia 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.engUniversity of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission.myasthenia graviscritical disability studiesnarrativelived experiencequalitativeEducation--HealthEducation--Social SciencesUnderstanding the lived experiences of people with myasthenia gravis: a narrative-based studymaster thesis10.11575/PRISM/39735