IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v63y2006i11p2962-2973.html
   My bibliography  Save this article

Creating meaning in fibromyalgia syndrome

Author

Listed:
  • Madden, Sue
  • Sim, Julius

Abstract

Gaining a diagnosis is considered to legitimate a person's illness, to both the self and the wider social world, while also giving hope that treatments, and possibly a cure, will be found. A further function of diagnosis from the patient's perspective is to give meaning to the illness experience, which is often uncertain and confusing. To do so, a diagnosis must itself have meaning. This paper explores the creation of meaning in a medically unexplained disorder, fibromyalgia syndrome (FMS). Semi-structured interviews, in which the diagnostic process was explored, were conducted with 17 people diagnosed with FMS in the United Kingdom, selected from a hospital database (16 women, 1 man). Documentary analysis was also undertaken on information available from support groups and health professionals. Although initially an acceptable diagnosis to sufferers, FMS was viewed as a mysterious label, which provided no meaning at the time of diagnosis. The sought information was accessed in an attempt to resolve its meaninglessness, but this proved problematic due to the ambiguous definition of FMS within the medical and support group literature, the invisible nature of the illness, and the lack of an environment where these uncertainties could be openly discussed. Informants varied in the degree of longer-term acceptance of a diagnosis of FMS, in relation to the concordance they achieved between the diagnosis and their experience of illness.

Suggested Citation

  • Madden, Sue & Sim, Julius, 2006. "Creating meaning in fibromyalgia syndrome," Social Science & Medicine, Elsevier, vol. 63(11), pages 2962-2973, December.
  • Handle: RePEc:eee:socmed:v:63:y:2006:i:11:p:2962-2973
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277-9536(06)00330-3
    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. Molleman, Eric & Krabbendam, Pieter J. & Annyas, Albertus A. & Koops, Heimen Schraffordt & Sleijfer, Dirk Th. & Vermey, Albert, 1984. "The significance of the doctor-patient relationship in coping with cancer," Social Science & Medicine, Elsevier, vol. 18(6), pages 475-480, January.
    2. Peters, Sarah & Stanley, Ian & Rose, Michael & Salmon, Peter, 0. "Patients with medically unexplained symptoms: Sources of patients' authority and implications for demands on medical care," Social Science & Medicine, Elsevier, vol. 46(4-5), pages 559-565, February.
    3. Blaxter, Mildred, 1983. "The causes of disease : Women talking," Social Science & Medicine, Elsevier, vol. 17(2), pages 59-69, January.
    4. Garro, Linda C., 1994. "Narrative representations of chronic illness experience: cultural models of illness, mind, and body in stories concerning the Temporomandibular Joint (TMJ)," Social Science & Medicine, Elsevier, vol. 38(6), pages 775-788, March.
    5. Adams, Stephanie & Pill, Roisin & Jones, Alan, 1997. "Medication, chronic illness and identity: The perspective of people with asthma," Social Science & Medicine, Elsevier, vol. 45(2), pages 189-201, July.
    6. 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.
    7. Stewart, David C. & Sullivan, Thomas J., 1982. "Illness behavior and the sick role in chronic disease : The case of multiple sclerosis," Social Science & Medicine, Elsevier, vol. 16(15), pages 1397-1404, January.
    8. Glenton, Claire, 2003. "Chronic back pain sufferers--striving for the sick role," Social Science & Medicine, Elsevier, vol. 57(11), pages 2243-2252, December.
    9. Arksey, Hilary & Sloper, Patricia, 1999. "Disputed diagnoses: the cases of RSI and childhood cancer," Social Science & Medicine, Elsevier, vol. 49(4), pages 483-497, August.
    10. U. Kelle, 1997. "Theory Building in Qualitative Research and Computer Programs for the Management of Textual Data," Sociological Research Online, , vol. 2(2), pages 10-22, June.
    11. O'Flynn, Norma & Britten, Nicky, 2000. "Menorrhagia in general practice -- disease or illness," Social Science & Medicine, Elsevier, vol. 50(5), pages 651-661, March.
    12. Petchey, Roland & Farnsworth, Bill & Williams, Jacky, 2000. "'The last resort would be to go to the GP'. Understanding the perceptions and use of general practitioner services among people with HIV/AIDS," Social Science & Medicine, Elsevier, vol. 50(2), pages 233-245, January.
    13. Meile, Richard L., 1986. "Pathways to patienthood: Sick role and labeling perspectives," Social Science & Medicine, Elsevier, vol. 22(1), pages 35-40, January.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Nicole Brown, 2021. "The Social Course of Fibromyalgia: Resisting Processes of Marginalisation," IJERPH, MDPI, vol. 19(1), pages 1-13, December.
    2. Annie T. Chen, 2022. "Interactions between affect, cognition, and information behavior in the context of fibromyalgia," Journal of the Association for Information Science & Technology, Association for Information Science & Technology, vol. 73(1), pages 31-44, January.
    3. Groenevelt, I.P.(Irene) & de Boer, M.L.(Marjolein), 2023. "Contesting misrecognition online: Experiences of epistemic in/justice by vloggers with contested illnesses," Social Science & Medicine, Elsevier, vol. 327(C).
    4. 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.
    5. Boersma, Jolanda J. & Brown, Patrick, 2020. "The tired hero and her (il)legitimation: Reworking Parsons to analyse experiences of burnout within the Dutch employment system and lifeworld," Social Science & Medicine, Elsevier, vol. 265(C).
    6. 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.
    7. Greco, Monica, 2012. "The classification and nomenclature of ‘medically unexplained symptoms’: Conflict, performativity and critique," Social Science & Medicine, Elsevier, vol. 75(12), pages 2362-2369.
    8. Bojovic, Neva & Geiger, Susi, 2023. "Epistemic and institutional recognition work in changing conditions of social visibility: Anosmia's journey from the shadows to the spotlight," Social Science & Medicine, Elsevier, vol. 338(C).
    9. Ross, Emily & Swallow, Julia & Kerr, Anne & Chekar, Choon Key & Cunningham-Burley, Sarah, 2021. "Diagnostic layering: Patient accounts of breast cancer classification in the molecular era," Social Science & Medicine, Elsevier, vol. 278(C).
    10. Lonardi, Cristina, 2007. "The passing dilemma in socially invisible diseases: Narratives on chronic headache," Social Science & Medicine, Elsevier, vol. 65(8), pages 1619-1629, October.
    11. 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.

    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. 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.
    2. 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.
    3. 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.
    4. Dassieu, Lise & Kaboré, Jean-Luc & Choinière, Manon & Arruda, Nelson & Roy, Élise, 2020. "Painful lives: Chronic pain experience among people who use illicit drugs in Montreal (Canada)," Social Science & Medicine, Elsevier, vol. 246(C).
    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. Lawton, Julia & Peel, Elizabeth & Parry, Odette & Araoz, Gonzalo & Douglas, Margaret, 2005. "Lay perceptions of type 2 diabetes in Scotland: bringing health services back in," Social Science & Medicine, Elsevier, vol. 60(7), pages 1423-1435, April.
    7. Melander, Stina, 2023. "Different logics of pain: the gendered dimension of chronic pain in a relational setting," Social Science & Medicine, Elsevier, vol. 335(C).
    8. Garthwaite, Kayleigh & Bambra, Clare, 2017. "“How the other half live”: Lay perspectives on health inequalities in an age of austerity," Social Science & Medicine, Elsevier, vol. 187(C), pages 268-275.
    9. Beach, Wayne A. & Easter, David W. & Good, Jeffrey S. & Pigeron, Elisa, 2005. "Disclosing and responding to cancer "fears" during oncology interviews," Social Science & Medicine, Elsevier, vol. 60(4), pages 893-910, February.
    10. Aujoulat, Isabelle & Marcolongo, Renzo & Bonadiman, Leopoldo & Deccache, Alain, 2008. "Reconsidering patient empowerment in chronic illness: A critique of models of self-efficacy and bodily control," Social Science & Medicine, Elsevier, vol. 66(5), pages 1228-1239, March.
    11. 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).
    12. Ben Butlin & Keith Laws & Rebecca Read & Matthew D Broome & Shivani Sharma, 2019. "Concepts of mental disorders in the United Kingdom: Similarities and differences between the lay public and psychiatrists," International Journal of Social Psychiatry, , vol. 65(6), pages 507-514, September.
    13. Munir, F. & Leka, S. & Griffiths, A., 2005. "Dealing with self-management of chronic illness at work: predictors for self-disclosure," Social Science & Medicine, Elsevier, vol. 60(6), pages 1397-1407, March.
    14. 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.
    15. Marcello Nonnis & Mirian Agus & Monica Piera Pirrone & Stefania Cuccu & Maria Luisa Pedditzi & Claudio Giovanni Cortese, 2021. "Burnout and Engagement Dimensions in the Reception System of Illegal Immigration in the Mediterranean Sea. A Qualitative Study on a Sample of Italian Practitioners," IJERPH, MDPI, vol. 18(7), pages 1-16, April.
    16. 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.
    17. Marcello Nonnis & Monica Piera Pirrone & Stefania Cuccu & Mirian Agus & Maria Luisa Pedditzi & Claudio Giovanni Cortese, 2020. "Burnout Syndrome in Reception Systems for Illegal Immigrants in the Mediterranean. A Quantitative and Qualitative Study of Italian Practitioners," Sustainability, MDPI, vol. 12(12), pages 1-23, June.
    18. Lonardi, Cristina, 2007. "The passing dilemma in socially invisible diseases: Narratives on chronic headache," Social Science & Medicine, Elsevier, vol. 65(8), pages 1619-1629, October.
    19. Lawrence, Vanessa & McCombie, Catherine & Nikolakopoulos, Georgios & Morgan, Craig, 2021. "Navigating the mental health system: Narratives of identity and recovery among people with psychosis across ethnic groups," Social Science & Medicine, Elsevier, vol. 279(C).
    20. Rudolf R. Sinkovics & Eva A. Alfoldi, 2012. "Progressive Focusing and Trustworthiness in Qualitative Research," Management International Review, Springer, vol. 52(6), pages 817-845, December.

    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:63:y:2006:i:11:p:2962-2973. 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.