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Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences

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  • Almudena Alameda Cuesta
  • à lvaro Pazos Garciandía
  • Cristina Oter Quintana
  • Marta Elena Losa Iglesias

Abstract

Fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, and multiple chemical sensitivity can be considered contested illnesses. The questioning of the status of these conditions as real diseases reduces feelings of legitimacy in those affected. The purpose of this study was to analyze subjectivity construction processes in people with these diseases. A qualitative exploratory study was conducted from the perspective of hermeneutic phenomenology and ethnosociology. We used life stories for compiling data (13 informants were interviewed face-to-face), and sociological discourse analysis was developed. Three main categories were identified: (a) self and grieving; (b) images and practices relating to fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, and multiple chemical sensitivity; and (c) relationships with health professionals. This study shows that daily experiences of people living with these diseases are marked by stigmatization processes. The ultimate purpose of nursing care for people with these conditions should be to reduce their vulnerability and exclusion.

Suggested Citation

  • Almudena Alameda Cuesta & à lvaro Pazos Garciandía & Cristina Oter Quintana & Marta Elena Losa Iglesias, 2021. "Fibromyalgia, Chronic Fatigue Syndrome, and Multiple Chemical Sensitivity: Illness Experiences," Clinical Nursing Research, , vol. 30(1), pages 32-41, January.
    • Handle: RePEc:sae:clnure:v:30:y:2021:i:1:p:32-41
    DOI: 10.1177/1054773819838679
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    References listed on IDEAS

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    1. 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.
    2. Brian Walitt & Richard L Nahin & Robert S Katz & Martin J Bergman & Frederick Wolfe, 2015. "The Prevalence and Characteristics of Fibromyalgia in the 2012 National Health Interview Survey," PLOS ONE, Public Library of Science, vol. 10(9), pages 1-16, September.
    3. Madeleine Akrich, 2010. "From Communities of Practice to Epistemic Communities: Health Mobilizations on the Internet," Sociological Research Online, , vol. 15(2), pages 116-132, May.
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