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Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US

Author

Listed:
  • Zavestoski, Stephen
  • Brown, Phil
  • McCormick, Sabrina
  • Mayer, Brian
  • D'Ottavi, Maryhelen
  • Lucove, Jaime C.

Abstract

We examine Gulf War illnesses--which include the fatigue, joint pain, dermatitis, headaches, memory loss, blurred vision, diarrhea, and other symptoms reported by Gulf War veterans--in relation to other medically unexplained physical symptoms such as multiple chemical sensitivity, chronic fatigue syndrome, and fibromyalgia. Our intent is to examine the diagnosis negotiations involved in these mysterious diseases, by showing the different forms of legitimacy involved in such interactions. Factors involved in diagnostic legitimacy are: diagnostic legitimacy in the medical community, lay acceptance of the diagnosis, uncertainty in looking for causes, and social mobilization. We conclude by noting that research may not be able to find any cause for these diseases/conditions; hence, it may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process. Such a change can alter patients' expectations and taken-for-granted assumptions about medicine, and perhaps in turn reduce the frequency with which dissatisfied individuals form illness groups that mobilize to challenge what they see as an unresponsive medical system.

Suggested Citation

  • Zavestoski, Stephen & Brown, Phil & McCormick, Sabrina & Mayer, Brian & D'Ottavi, Maryhelen & Lucove, Jaime C., 2004. "Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US," Social Science & Medicine, Elsevier, vol. 58(1), pages 161-175, January.
  • Handle: RePEc:eee:socmed:v:58:y:2004:i:1:p:161-175
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    Citations

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    Cited by:

    1. Gage, Elizabeth A., 2013. "Social networks of experientially similar others: Formation, activation, and consequences of network ties on the health care experience," Social Science & Medicine, Elsevier, vol. 95(C), pages 43-51.
    2. Epstein, Steven, 2016. "The politics of health mobilization in the United States: The promise and pitfalls of “disease constituencies”," Social Science & Medicine, Elsevier, vol. 165(C), pages 246-254.
    3. Copelton, Denise A. & Valle, Giuseppina, 2009. ""You don't need a prescription to go gluten-free": The scientific self-diagnosis of celiac disease," Social Science & Medicine, Elsevier, vol. 69(4), pages 623-631, August.
    4. Bloeser, Katharine & McCarron, Kelly K. & Merker, Vanessa L. & Hyde, Justeen & Bolton, Rendelle E. & Anastasides, Nicole & Petrakis, Beth Ann & Helmer, Drew A. & Santos, Susan & Litke, David & Pigeon,, 2021. "“Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans living with Gulf War Illness," Social Science & Medicine, Elsevier, vol. 284(C).
    5. Easter, Michele M., 2012. "“Not all my fault”: Genetics, stigma, and personal responsibility for women with eating disorders," Social Science & Medicine, Elsevier, vol. 75(8), pages 1408-1416.
    6. Cohn, Simon & Dyson, Clare & Wessely, S., 2008. "Early accounts of Gulf War illness and the construction of narratives in UK service personnel," Social Science & Medicine, Elsevier, vol. 67(11), pages 1641-1649, December.
    7. Rotolo, Thomas & Lengefeld, Michael, 2020. "Clearing the cobwebs: An analysis of the timing of youth concussion legislation in U.S. states," Social Science & Medicine, Elsevier, vol. 265(C).

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