Chronic Illness as a Source of Happiness: Paradox or perfectly normal?

著者

  • S. Hoppe University of Amsterdam

##semicolon##

https://doi.org/10.5195/hcs.2013.138

##semicolon##

chronic illness##common.commaListSeparator## disability##common.commaListSeparator## happiness##common.commaListSeparator## disability paradox##common.commaListSeparator## Multiple Sclerosis

要旨

In this paper I analyse the relation between happiness and chronic illness from the perspective of medical anthropology and disability studies. By looking at the disability paradox I deconstruct society’s view of people with a disability. I argue that the disability paradox is problematic as it ignores the views of people with a disability. Moreover, such a paradox reinforces the idea that living with a chronic illness or disability is a devastating experience and that happiness and disability are mutally exclusive realities. Based on empiric examples of people who suffer from Multiple Sclerosis I demonstrate that people with a chronic illness can experience happiness in spite of illness, but also as a consequence of it.

 

##submission.authorBiography##

##submission.authorWithAffiliation##

Silke Hoppe, a trained cultural anthropologist, is researcher with the department of Sociology and Anthropology (Faculty of Social and Behavioural Sciences) at the University of Amsterdam. Her work has investigated different forms of illness narratives of people who have been diagnosed with Multiple Sclerosis. She has also worked in the field of disability studies and undertaken research on the role of reciprocity in people’s illness experiences. Currently, Silke Hoppe's doctoral research with the Univeristy of Amsterdam focuses on dementia and long-term care in which illness experiences of people with dementia and their family members is a key focus.

Much of Silke Hoppe's previous and ongoing research has been published in the International Journal of Medical Anthropology (previously Medische Antopologie).

##submission.citations##

Albrecht, G. L., & Devlieger, P. J. (1999). The disability paradox: High quality of life against all odds. Social Science & Medicine, 48(8), 977-988. doi:10.1016/S0277-9536(98)00411-0

Black, R. S., & Pretes, L. (2007). Victims and victors: Representation of physical disability on the silver screen. Research & Practice for Persons with Severe Disabilities, 32(1), 66-83.

Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167-182. doi:10.1111/1467-9566.ep11339939

Charmaz, K. (1995). The body, identity, and self: Adapting to impairment. Sociological Quarterly, 36(4), 657-680.

Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health & Illness, 5(2), 168-195. doi:10.1111/1467-9566.ep10491512

Charmaz, K. (1991). Good days, bad days : The self in chronic illness and time. New Brunswick, N.J.: Rutgers University Press.

Diener, E. (2000). Subjective well-being - the science of happiness and a proposal for a national index. American Psychologist, 55(1), 34-43.

Dunn, D. S., & Brody, C. (2008). Defining the good life following acquired physical disability. Rehabilitation Psychology, 53(4), 413-425. doi:10.1037/a0013749

Duval, M. L. (1984). Psychosocial metaphors of physical distress among MS patients. Social Science & Medicine, 19(6), 635-638. doi:10.1016/0277-9536(84)90230-2

Jacoby, A., Snape, D., & Baker, G. A. (2005). Epilepsy and social identity: The stigma of a chronic neurological disorder. Lancet Neurology, 4(3), 171-178. doi:10.1016/S1474-4422(05)01014-8

Koch, T. (2000). The illusion of paradox: Commentary on Albrecht, G.L. and Devlieger, P.J. (1998). the disability paradox: High quality of life against all odds. social science & medicine 48, 977–988. Social Science & Medicine, 50(6), 757-759. doi:10.1016/S0277-9536(99)00385-8

Kool, J. (2010). Ach arm, genegeerd lichaam. Medische Antropologie, 22(2), 253-261.

Kutner, J.S., Nowels, D.E., Kassner, C.T., Houser, J., Bryant, L. & Main, D.S. Confirmation of the disability paradox among hospice patients: Preservation of quality of life despite physical ailments and psychosocial concerns. Palliative Supportive Care, 1(3), 231-237. doi:10.1017/S1478951503030281

Marinic, M., & Brkljacic, T. (2008). Love over gold-the correlation of happiness level with some life satisfaction factors between persons with and without physical disability. Journal of Developmental and Physical Disabilities, 20(6), 527-540. doi:10.1007/s10882-008-9115-7

Mauss, I. B., Tamir, M., Anderson, C. L., & Savino, N. S. (2011). Can seeking happiness make people unhappy? paradoxical effects of valuing happiness. Emotion, 11(4), 807-815. doi:10.1037/a0022010

McCabe, M. P., & McKern, S. (2002). Quality of life and multiple sclerosis: Comparison between people with multiple sclerosis and people from the general population. Journal of Clinical Psychology in Medical Settings, 9(4), 287-295.

Mehnert, T., Krauss, H. H., Nadler, R., & Boyd, M. (1990). Correlates of life satisfaction in those with disabling conditions. Rehabilitation Psychology, 35(1), 3-17. doi:10.1037/h0079046

Meyers, A. R. (2000). From function to felicitude: Physical disability and the search for happiness in health services research. American Journal of Mental Retardation, 105(5), 342-351.

Nozick, R. (1989). Happiness. The examined life. philosophical meditations (pp. 99-117)

Oliver, M. (1990). The politics of disablement. New York: Palgrave Macmillan.

Pakenham, K. I., & Fleming, M. (2011). Relations between acceptance of multiple sclerosis and positive and negative adjustments. Psychology & Health, 26(10), 1292-1309. doi:10.1080/08870446.2010.517838

Rose, N. (1999). Powers of Freedom Reframing Political Thought. Cambridge: Cambridge University Press.

Ryan, K., Rapport, L., Sherman, T., Hanks, R., Lisak, R., & Khan, O. (2007). Predictors of subjective well-being among individuals with multiple sclerosis. The Clinical Neuropsychologist, 21(2), 239-262. doi:10.1080/13854040600582460

Shakespeare, T. (1994). Cultural representation of disabled people: Dustbins for disavowal? Disability & Society, 9(3), 283-299. doi:10.1080/09687599466780341

Shakespeare, T. (1996) "The body line controversy": a new direction for Disability Studies? Paper presented at Hull Disability Studies Seminar.

Stewart, D. C., & Sullivan, T. J. (1982). Illness behavior and the sick role in chronic disease: The case of multiple sclerosis. Social Science & Medicine, 16(15), 1397-1404. doi:10.1016/0277-9536(82)90134-4

Sunderland, N., Catalano, T., & Kendall, E. (2009). Missing discourses: Concepts of joy and happiness in disability. Disability & Society, 24(6), 703-714. doi:10.1080/09687590903160175

Susman, J. (1994). Disability, stigma and deviance. Social Science & Medicine, 38(1), 15-22. doi:10.1016/0277-9536(94)90295-X

Thompson, A. J., & Hobart, J. C.Multiple sclerosis: Assessment of disability and disability scales. Journal of Neurology, 245(4), 189-196. doi:10.1007/s004150050204

Thorne, S., & Paterson, B. (1998). Shifting images of chronic illness. Image: The Journal of Nursing Scholarship, 30(2), 173-178. doi:10.1111/j.1547-5069.1998.tb01275.x

Ubel, P. A., Loewenstein, G., Schwarz, N., & Smith, D. (2005). Misimagining the unimaginable: The disability paradox and health care decision making. Health Psychology, 24(4), S57-S62. doi:10.1037/0278-6133.24.4.S57

Uguz, F., Akpinar, Z., Ozkan, I., & Tokgoz, S. (2008). Mood and anxiety disorders in patients with multiple sclerosis. International Journal of Psychiatry in Clinical Practice, 12(1), 19-24. doi:10.1080/13651500701330825

Ware, N.C. (1999). Toward a model of social course in chronic illness: The example of chronic fatigue syndrome. Culture, Medicine & Psychiatry 23: 303-31.

Williams, G. (2001). Theorizing disability. In G. L. Albrecht, K. D. Seligman & M. Bury (Eds.), Handbook of disability studies. California/London/New Delhi: SAGE Publications.

##submission.downloads##

出版済

2013-11-15

巻号

巻 5 号 1 (2013): Translating Happiness: Medicine, Culture and Social Progress

セクション

Articles

##submission.license##

Authors who publish with this journal agree to the following terms:

  1. The Author retains copyright in the Work, where the term “Work” shall include all digital objects that may result in subsequent electronic publication or distribution.
  2. Upon acceptance of the Work, the author shall grant to the Publisher the right of first publication of the Work.
  3. The Author shall grant to the Publisher and its agents the nonexclusive perpetual right and license to publish, archive, and make accessible the Work in whole or in part in all forms of media now or hereafter known under a Creative Commons Attribution 4.0 International License or its equivalent, which, for the avoidance of doubt, allows others to copy, distribute, and transmit the Work under the following conditions:
    1. Attribution—other users must attribute the Work in the manner specified by the author as indicated on the journal Web site;
    with the understanding that the above condition can be waived with permission from the Author and that where the Work or any of its elements is in the public domain under applicable law, that status is in no way affected by the license.
  4. The Author is able to enter into separate, additional contractual arrangements for the nonexclusive distribution of the journal's published version of the Work (e.g., post it to an institutional repository or publish it in a book), as long as there is provided in the document an acknowledgement of its initial publication in this journal.
  5. Authors are permitted and encouraged to post online a prepublication manuscript (but not the Publisher’s final formatted PDF version of the Work) in institutional repositories or on their Websites prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work. Any such posting made before acceptance and publication of the Work shall be updated upon publication to include a reference to the Publisher-assigned DOI (Digital Object Identifier) and a link to the online abstract for the final published Work in the Journal.
  6. Upon Publisher’s request, the Author agrees to furnish promptly to Publisher, at the Author’s own expense, written evidence of the permissions, licenses, and consents for use of third-party material included within the Work, except as determined by Publisher to be covered by the principles of Fair Use.
  7. The Author represents and warrants that:
    1. the Work is the Author’s original work;
    2. the Author has not transferred, and will not transfer, exclusive rights in the Work to any third party;
    3. the Work is not pending review or under consideration by another publisher;
    4. the Work has not previously been published;
    5. the Work contains no misrepresentation or infringement of the Work or property of other authors or third parties; and
    6. the Work contains no libel, invasion of privacy, or other unlawful matter.
  8. The Author agrees to indemnify and hold Publisher harmless from Author’s breach of the representations and warranties contained in Paragraph 6 above, as well as any claim or proceeding relating to Publisher’s use and publication of any content contained in the Work, including third-party content.

Revised 7/16/2018. Revision Description: Removed outdated link.