“Top notes of gluten-free oatcakes, middle notes of humid sheets and a base note of despair” – Stories of Long Covid in ‘The Guardian’

Abstract

Top notes of gluten-free oatcakes, middle notes of humid sheets and a base note of despair" -Stories of Long Covid in The Guardian 1 Introduction'Post-COVID-19 condition,' as it was termed by the WHO in September 2020, is characterised by its broad range of persisting symptoms following (potential) COVID-19 infection (Soriano et al. 2022). One large-scale survey identifies more than 200 symptoms associated with the condition . They include 'brain fog,' fatigue, difficulty with breathing/shortness of breath, pain in various parts of the body (e.g., chest, head, joints), fever, sleep problems, heart palpitations, indigestion, as well as a range of mental health effects. These symptoms, often lasting beyond four weeks after assumed infection, can be episodic and phases of momentary recovery can alternate with recurring symptoms. Several names have been used to refer to what is now more commonly known as 'Long Covid:' the above-mentioned 'post-COVID-19 condition,' 'post-viral syndrome,' 'post-acute sequelae of COVID-19/Post-acute COVID syndrome,' 'post-viral syndrome,' or 'chronic COVID syndrome ' (Beccia et al. 2022, 20-23; Miyake and Martin 2021, 1-2). 'Long Covid' is the name generally favoured by most Long Covid patient groups. Patients with Long Covid tend to selfidentify as 'Long Haulers' -a term first used by Amy Watson in a Facebook post in allusion to the endless journeys of long-haul truck drivers (Callard and Perego 2021, 2). As the first "patient-made illness" delineated by sufferers interacting with each other on social media, the name 'Long Covid' is meant to highlight the focus on "lived patient experience" (Callan et al. 2022, 1). First introduced via a Twitter hashtag by academic Elisa Perego, the term signals the persisting nature of the illness, rather than describing it as an after-effect (cf. Callard and Perego 2021;Perego et al. 2020). "Long Covid," advocates argue, "as an open and malleable term, has many advantages for describing persistent symptoms and/or sequelae of infection" and aims to "side-[step] the problems of 'post-' (e.g., 'post-Covid syndrome,' 'post-acute') and 'chronic'" (Perego et al. 2020, n.p.). There is no 'post' in Long Covid -it is a disease that tends to come and go. Long Haulers have been engaged in various forms of online activism, advocacy, and collective action, a phenomenon that has begun to draw critical attention (Schermuly, Peterson, and Anderson 2021). Digital environments have played a central role in these endeavours, enabling the interactive production and exchange of experiential 1 This article is part of the inter-university cluster "Post-Covid Care: Translational Health Economics and Medical Humanities," funded by the University of Vienna and the Medical University of Vienna.