https://doi.org/10.4081/qrmh.2024.12175
MeSsy identities: An ethnographic exploration of a multiple sclerosis support group
Submitted: 11 December 2023
Accepted: 21 May 2024
Published: 19 September 2024
Accepted: 21 May 2024
Abstract Views: 994
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All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.
Authors
The following is an ethnographic study of a multiple sclerosis (MS) support group. This study underscores the importance of access to counternarratives for individuals with chronic illness and disabilities through organizational structures such as support groups. This work can help those with disabilities/chronic diseases, such as MS, because it provides a space for discussing the communicative forces that shape individual experiences of living with disability and chronic illness. Thus, this study seeks to understand how pharmaceutical representatives’ and doctors’ grand medical narratives influence the communication of MS support group attendees and their construction/ performance of self. This study shows that participation in support groups provides a space to renegotiate identity in which new forms of self can develop external to the dominant discourse. The support group becomes a space where counternarratives of empowerment develop in the face of master narratives.
Allison, J. (1994). Narrative and time: A phenomenological reconsideration. Text and Performance Quarterly, 14(2), 108–125.
DOI: https://doi.org/10.1080/10462939409366076
Barnes, C., Oliver, M., & Barton, L. (2002). Disability studies today. Polity Press.
Berger, R. (2013). Introducing disability studies. Lynne Reinner Publishers, Inc.
Charmaz, K. (2001). Grounded theory. Contemporary Field Research, 335–352.
DOI: https://doi.org/10.4135/9781848608337.n11
Conquergood, D. (1991). Rethinking ethnography: Towards a critical cultural politics. Communication Monographs, 58(2), 179-194.
DOI: https://doi.org/10.1080/03637759109376222
Coopman, S.J. (2003). Communicating disability: Metaphors of oppression, metaphors of empowerment. In P.J. Kalbfleisch (Ed.), Communication Yearbook (pp. 337-394).
DOI: https://doi.org/10.1080/23808985.2003.11679030
Coreil, J., Wilke, J., & Pintado, I. (2004). Cultural models of illness and recovery in breast cancer support groups. Qualitative Health Research, 14(7), 905-923.
DOI: https://doi.org/10.1177/1049732304266656
Corker, M., & French, S. (1999). Disability discourse. Open University Press.
Davis, L. J. (2006). Constructing normalcy: The bell curve, the novel, and the invention of the disabled body in the nineteenth century. In L.J. Davis (Ed.) The Disability Studies Reader. (pp. 3–19). Routledge.
Eeltink, C., & Duffy, M. (2004). Restorying the illness experience in multiple sclerosis. The Family Journal, 12(3), 282–286.
DOI: https://doi.org/10.1177/1066480704264567
Garden, R. (2010). Disability and narrative: New directions for medicine and the medical humanities. Medical Humanities, 36(2), 70–74.
DOI: https://doi.org/10.1136/jmh.2010.004143
Geertz, C. (1973). Thick description: Toward an interpretive theory of culture. The
interpretation of cultures (pp. 3–30). Basic Books.
Grue, J. (2011). Discourse analysis and disability: Some topics and issues. Discourse & Society, 22(5), 532–546.
DOI: https://doi.org/10.1177/0957926511405572
Harter, L., Scott, J., Novak, D., Leeman, M., & Morris, J. (2006). Freedom through flight: Performing a counter-narrative of disability. Journal of Applied Communication Research, 34(1), 3-29.
DOI: https://doi.org/10.1080/00909880500420192
Hoops, J. F. (2008). “I have MS. I am not MS.”: Disequilibrium, discordance, detachment, dichotomy, and diminishment in the construction of a multiple sclerosis identity. Kaleidoscope: A Graduate Journal of Qualitative Communication Research, 7, 83–108.
Jarman, M., Monaghan, L., & Harkin, A. Q. (Eds.). (2017). Barriers and belonging: Personal narratives of disability. Philadelphia, PA: Temple University Press.
Katzenstein, M. F. (1987). Comparing the feminist movements of the United States and Western Europe: An overview. In M. F. Katzenstein & C. M. Mueller (Eds.), The women’s movements of the United States and Western Europe (pp. 3-22). Temple University Press.
Langellier, K. M. (2009). Performing narrative medicine. Journal of Applied Communication Research, 37(2), 151-158.
DOI: https://doi.org/10.1080/00909880902792263
Lenchuk, I., & Swain, M. (2010). Alise’s small stories: Indices of identity construction and of resistance to the discourse of cognitive impairment. Language Policy, 9, 9–28.
DOI: https://doi.org/10.1007/s10993-009-9149-4
Lindlof, T. R., & Taylor, B. C. (2011). Qualitative communication research methods.
Sage.
Linton, S. (2006). Reassigning meaning. In L.J. Davis (Ed.), The disability studies reader, (pp. 161–172). Routledge.
Lyotard, J. F. (1984). The postmodern condition: A report on knowledge. University of Minnesota Press.
DOI: https://doi.org/10.2307/1772278
Olsson, M., Lexell, J., & Soderberg, S. (2008). The meaning of women’s experiences of living with multiple sclerosis. Health Care for Women International, 29(4), 416-430.
DOI: https://doi.org/10.1080/07399330701876646
Park-Fuller, L. M. (1995). Narration and narratization of a cancer story: Composing and performing a clean breast of it. Text and Performance Quarterly, 15(1), 60-67.
DOI: https://doi.org/10.1080/10462939509366105
Riessman, C. (2003). Performing identities in illness narrative: Masculinity and multiple sclerosis. Qualitative Research, 3(1), 5–28.
DOI: https://doi.org/10.1177/146879410300300101
Shadden, B.B., & Agan, J.P. (2004). Renegotiation of identity: The social context of aphasia support groups. Top Language Disorders, 24(3), 174-186.
DOI: https://doi.org/10.1097/00011363-200407000-00005
Siebers, T. (2008). Disability theory. University of Michigan Press.
DOI: https://doi.org/10.3998/mpub.309723
Snyder, S. L., & Mitchell, D. T. (2006). Cultural locations of disability. University of Chicago Press.
DOI: https://doi.org/10.7208/chicago/9780226767307.001.0001
Thorne, S., Con, A., McGuinness, L., McPherson, G., & Harris, S. (2004). Health care communication issues in multiple sclerosis: An interpretive description. Qualitative Health Research, 14(1), 5–22.
DOI: https://doi.org/10.1177/1049732303259618
Tracy, J. F. (2004). Between discourse and being: The commodification of pharmaceuticals in late capitalism. The Communication Review, 7(1), 15–34.
DOI: https://doi.org/10.1080/10714420490280170
UIC Department of Disability and Human Development (2015). Retrieved from http://www.ahs.uic.edu/dhd/academics/phd/.
Yorkston, K.M., Klasner, E.R., & Swanson, K.M. (2001). Communication in context: A qualitative study of the experiences of individuals in multiple sclerosis. American Journal of Speech-Language Pathology. 10, 126–137.
DOI: https://doi.org/10.1044/1058-0360(2001/013)
How to Cite
Johnson, Alyse Keller. 2024. “MeSsy Identities: An Ethnographic Exploration of a Multiple Sclerosis Support Group”. Qualitative Research in Medicine and Healthcare 8 (2). https://doi.org/10.4081/qrmh.2024.12175.
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