IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v62y2006i3p577-590.html
   My bibliography  Save this article

Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses

Author

Listed:
  • Dumit, Joseph

Abstract

Chronic fatigue syndrome and multiple chemical sensitivity are two clusters of illnesses that are pervaded by medical, social and political uncertainty. This article examines how facts are talked about and experienced in struggles over these emergent, contested illnesses in the US. Based principally on a large archive of internet newsgroup postings, and also on fieldwork and on published debates, it finds that (1) sufferers describe their experiences of being denied healthcare and legitimacy through bureaucratic categories of exclusion as dependent upon their lack of biological facts; (2) institutions manage these exclusions rhetorically through exploiting the open-endedness of science to deny efficacy to new facts; (3) collective patient action responds by archiving the systematic nature of these exclusions and developing counter-tactics. The result is the maintenance of these very expensive struggles for all involved.

Suggested Citation

  • Dumit, Joseph, 2006. "Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses," Social Science & Medicine, Elsevier, vol. 62(3), pages 577-590, February.
    • Handle: RePEc:eee:socmed:v:62:y:2006:i:3:p:577-590
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277-9536(05)00302-3
    Download Restriction: Full text for ScienceDirect subscribers only
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Del Vecchio Good, Mary-Jo & Munakata, Tseunetsugu & Kobayashi, Yasuki & Mattingly, Cheryl & Good, Byron J., 1994. "Oncology and narrative time," Social Science & Medicine, Elsevier, vol. 38(6), pages 855-862, March.
    2. Clarke, Juanne N. & James, Susan, 2003. "The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome," Social Science & Medicine, Elsevier, vol. 57(8), pages 1387-1395, October.
    3. Werner, Anne & Malterud, Kirsti, 2003. "It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors," Social Science & Medicine, Elsevier, vol. 57(8), pages 1409-1419, October.
    4. Mattingly, Cheryl, 1994. "The concept of therapeutic 'emplotment'," Social Science & Medicine, Elsevier, vol. 38(6), pages 811-822, March.
    5. Åsbring, Pia & Närvänen, Anna-Liisa, 2003. "Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia," Social Science & Medicine, Elsevier, vol. 57(4), pages 711-720, August.
    6. Murphy, Robert F. & Scheer, Jessica & Murphy, Yolanda & Mack, Richard, 1988. "Physical disability and social liminality: A study in the rituals of adversity," Social Science & Medicine, Elsevier, vol. 26(2), pages 235-242, January.
    7. Lillrank, Annika, 2003. "Back pain and the resolution of diagnostic uncertainty in illness narratives," Social Science & Medicine, Elsevier, vol. 57(6), pages 1045-1054, September.
    8. Glenton, Claire, 2003. "Chronic back pain sufferers--striving for the sick role," Social Science & Medicine, Elsevier, vol. 57(11), pages 2243-2252, December.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Koekkoek, B. & Hutschemaekers, G. & van Meijel, B. & Schene, A., 2011. "How do patients come to be seen as 'difficult'?: A mixed-methods study in community mental health care," Social Science & Medicine, Elsevier, vol. 72(4), pages 504-512, February.
    2. Sim, Julius & Madden, Sue, 2008. "Illness experience in fibromyalgia syndrome: A metasynthesis of qualitative studies," Social Science & Medicine, Elsevier, vol. 67(1), pages 57-67, July.
    3. Melander, Stina, 2023. "Different logics of pain: the gendered dimension of chronic pain in a relational setting," Social Science & Medicine, Elsevier, vol. 335(C).
    4. Travers, Michele Kerry & Lawler, Jocalyn, 2008. "Self within a climate of contention: Experiences of chronic fatigue syndrome," Social Science & Medicine, Elsevier, vol. 66(2), pages 315-326, January.
    5. Crooks, Valorie A., 2007. "Exploring the altered daily geographies and lifeworlds of women living with fibromyalgia syndrome: A mixed-method approach," Social Science & Medicine, Elsevier, vol. 64(3), pages 577-588, February.
    6. Phillips, Tarryn, 2012. "Repressive authenticity in the quest for legitimacy: Surveillance and the contested illness lawsuit," Social Science & Medicine, Elsevier, vol. 75(10), pages 1762-1768.
    7. Richardson, Jane C. & Ong, Bie Nio & Sim, Julius, 2006. "Is chronic widespread pain biographically disruptive?," Social Science & Medicine, Elsevier, vol. 63(6), pages 1573-1585, September.
    8. Whitehead, Lisa Claire, 2006. "Quest, chaos and restitution: Living with chronic fatigue syndrome/myalgic encephalomyelitis," Social Science & Medicine, Elsevier, vol. 62(9), pages 2236-2245, May.
    9. Rasmussen, Erik Børve, 2020. "Rhetorical work and medical authority: Constructing convincing cases in insurance medicine," Social Science & Medicine, Elsevier, vol. 264(C).
    10. Madden, Sue & Sim, Julius, 2006. "Creating meaning in fibromyalgia syndrome," Social Science & Medicine, Elsevier, vol. 63(11), pages 2962-2973, December.
    11. Corbett, Mandy & Foster, Nadine E. & Ong, Bie Nio, 2007. "Living with low back pain--Stories of hope and despair," Social Science & Medicine, Elsevier, vol. 65(8), pages 1584-1594, October.
    12. Stockl, Andrea, 2007. "Complex syndromes, ambivalent diagnosis, and existential uncertainty: The case of Systemic Lupus Erythematosus (SLE)," Social Science & Medicine, Elsevier, vol. 65(7), pages 1549-1559, October.
    13. Pilkington, Karen & Ridge, Damien T. & Igwesi-Chidobe, Chinonso N. & Chew-Graham, Carolyn A. & Little, Paul & Babatunde, Opeyemi & Corp, Nadia & McDermott, Clare & Cheshire, Anna, 2020. "A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs," Social Science & Medicine, Elsevier, vol. 265(C).
    14. Emily D. Heaphy, 2013. "Repairing Breaches with Rules: Maintaining Institutions in the Face of Everyday Disruptions," Organization Science, INFORMS, vol. 24(5), pages 1291-1315, October.
    15. Schaepe, Karen Sue, 2011. "Bad news and first impressions: Patient and family caregiver accounts of learning the cancer diagnosis," Social Science & Medicine, Elsevier, vol. 73(6), pages 912-921, September.
    16. Lefkowitz, Deborah, 2022. "Black boxes and information pathways: An actor-network theory approach to breast cancer survivorship care," Social Science & Medicine, Elsevier, vol. 307(C).
    17. Rhodes, Tim & Bernays, Sarah & Terzic, Katarina Jankovic, 2009. "Medical promise and the recalibration of expectation: Hope and HIV treatment engagement in a transitional setting," Social Science & Medicine, Elsevier, vol. 68(6), pages 1050-1059, March.
    18. Higgins, Angela & Porter, Sam & O'Halloran, Peter, 2014. "General practitioners' management of the long-term sick role," Social Science & Medicine, Elsevier, vol. 107(C), pages 52-60.
    19. Kristin Turney, 2013. "Liminal Men: Incarceration and Family Instability," Working Papers 1478, Princeton University, School of Public and International Affairs, Center for Research on Child Wellbeing..
    20. Santer, Miriam & Wyke, Sally & Warner, Pam, 2008. "Women's management of menstrual symptoms: Findings from a postal survey and qualitative interviews," Social Science & Medicine, Elsevier, vol. 66(2), pages 276-288, January.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:62:y:2006:i:3:p:577-590. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.