IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v286y2021ics0277953621006584.html
   My bibliography  Save this article

Long Covid – The illness narratives

Author

Listed:
  • Rushforth, Alex
  • Ladds, Emma
  • Wieringa, Sietse
  • Taylor, Sharon
  • Husain, Laiba
  • Greenhalgh, Trisha

Abstract

Callard and Perego depict long Covid as the first illness to be defined by patients who came together on social media. Responding to their call to address why patients were so effective in making long Covid visible and igniting action to improve its care, we use narrative inquiry – a field of research that investigates the place and power of stories and storytelling. We analyse a large dataset of narrative interviews and focus groups with 114 people with long Covid (45 of whom were healthcare professionals) from the United Kingdom, drawing on socio-narratology (Frank), therapeutic emplotment (Mattingly) and polyphonia (Bakhtin). We describe how storytelling devices including chronology, metaphor, characterisation, suspense and imagination were used to create persuasive accounts of a strange and frightening new condition that was beset with setbacks and overlooked or dismissed by health professionals. The most unique feature of long Covid narratives (in most but not all cases) was the absence, for various pandemic-related reasons, of a professional witness to them. Instead of sharing their narratives in therapeutic dialogue with their own clinician, people struggled with a fragmented inner monologue before finding an empathetic audience and other resonant narratives in the online community. Individually, the stories seemed to make little sense. Collectively, they provided a rich description of the diverse manifestations of a grave new illness, a shared account of rejection by the healthcare system, and a powerful call for action to fix the broken story. Evolving from individual narrative postings to collective narrative drama, long Covid communities challenged the prevailing model of Covid-19 as a short-lived respiratory illness which invariably delivers a classic triad of symptoms; undertook and published peer-reviewed research to substantiate its diverse and protracted manifestations; and gained positions as experts by experience on guideline development groups and policy taskforces.

Suggested Citation

  • Rushforth, Alex & Ladds, Emma & Wieringa, Sietse & Taylor, Sharon & Husain, Laiba & Greenhalgh, Trisha, 2021. "Long Covid – The illness narratives," Social Science & Medicine, Elsevier, vol. 286(C).
  • Handle: RePEc:eee:socmed:v:286:y:2021:i:c:s0277953621006584
    DOI: 10.1016/j.socscimed.2021.114326
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953621006584
    Download Restriction: Full text for ScienceDirect subscribers only

    File URL: https://libkey.io/10.1016/j.socscimed.2021.114326?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    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. 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.
    2. Werner, Anne & Isaksen, L.W.Lise Widding & Malterud, Kirsti, 2004. "'I am not the kind of woman who complains of everything': Illness stories on self and shame in women with chronic pain," Social Science & Medicine, Elsevier, vol. 59(5), pages 1035-1045, September.
    3. Foster, Drew, 2016. "‘Keep complaining til someone listens’: Exchanges of tacit healthcare knowledge in online illness communities," Social Science & Medicine, Elsevier, vol. 166(C), pages 25-32.
    4. 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.
    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. Figueiredo, Bernardo & Sheahan, Jacob & Luo, Shiqi & Bird, Stephen & Wong Lit Wan, Dawn & Xenos, Sophia & Itsiopoulos, Catherine & Jessup, Rebecca & Zheng, Zhen, 2024. "Journey mapping long COVID: Agency and social support for long-hauling," Social Science & Medicine, Elsevier, vol. 340(C).
    2. Emily E. Chasco & Kimberly Dukes & DeShauna Jones & Alejandro P. Comellas & Richard M. Hoffman & Alpana Garg, 2022. "Brain Fog and Fatigue following COVID-19 Infection: An Exploratory Study of Patient Experiences of Long COVID," IJERPH, MDPI, vol. 19(23), pages 1-12, November.
    3. Kaplan, Kenton & Mendenhall, Emily, 2024. "Framing Long Covid through Patient activism in the United States: Patient, Provider, Academic, and Policymaker Views," Social Science & Medicine, Elsevier, vol. 350(C).
    4. Turner, Melody & Beckwith, Helen & Spratt, Tanisha & Vallejos, Elvira Perez & Coughlan, Barry, 2023. "The #longcovid revolution: A reflexive thematic analysis," Social Science & Medicine, Elsevier, vol. 333(C).

    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. Whitmarsh, Ian & Davis, Arlene M. & Skinner, Debra & Bailey, Donald Jr., 2007. "A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease," Social Science & Medicine, Elsevier, vol. 65(6), pages 1082-1093, September.
    2. Locock, Louise & Nettleton, Sarah & Kirkpatrick, Susan & Ryan, Sara & Ziebland, Sue, 2016. "‘I knew before I was told’: Breaches, cues and clues in the diagnostic assemblage," Social Science & Medicine, Elsevier, vol. 154(C), pages 85-92.
    3. Trundle, Catherine, 2011. "Biopolitical endpoints: Diagnosing a deserving British nuclear test veteran," Social Science & Medicine, Elsevier, vol. 73(6), pages 882-888, September.
    4. 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).
    5. 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.
    6. 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.
    7. Vololona Rabeharisoa & Michel Callon & Angela Marques Filipe & João Arriscado Nunes & Florence Paterson & Frédéric Vergnaud, 2012. "The dynamics of causes and conditions: the rareness of diseases in French and Portuguese patients' organizations' engagement in research," CSI Working Papers Series 026, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    8. 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.
    9. 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.
    10. 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.
    11. Wamsiedel, Marius, 2020. "Credibility work and moral evaluation at the ED," Social Science & Medicine, Elsevier, vol. 248(C).
    12. Fielding-Singh, Priya & Dmowska, Amelia, 2022. "Obstetric gaslighting and the denial of mothers’ realities," Social Science & Medicine, Elsevier, vol. 301(C).
    13. Claire Edwards & Etaoine Howlett & Madeleine Akrich & Vololona Rabeharisoa, 2012. "Attention deficit hyperactivity disorder in France and Ireland: parents' groups' scientific and political framing of an unsettled condition," CSI Working Papers Series 024, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    14. 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.
    15. Vololona Rabeharisoa & Orla O'Donovan, 2013. "‘Europe of patients, Europe for patients’: the Europeanization of healthcare policies by European patients’ organizations," CSI Working Papers Series 030, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    16. Kuchinskaya, Olga & Parker, Lisa S., 2018. "‘Recurrent losers unite’: Online forums, evidence-based activism, and pregnancy loss," Social Science & Medicine, Elsevier, vol. 216(C), pages 74-80.
    17. Eaves, Emery R., 2015. "“Just Advil”: Harm reduction and identity construction in the consumption of over-the-counter medication for chronic pain," Social Science & Medicine, Elsevier, vol. 146(C), pages 147-154.
    18. Wild, Cervantée & MacLean, Alice & Nettleton, Sarah & Hunt, Kate & Ziebland, Sue, 2024. "The double invisibility of Long Covid in children," Social Science & Medicine, Elsevier, vol. 347(C).
    19. Jutel, Annemarie, 2010. "Framing disease: The example of female hypoactive sexual desire disorder," Social Science & Medicine, Elsevier, vol. 70(7), pages 1084-1090, April.
    20. 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.

    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:286:y:2021:i:c:s0277953621006584. 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.