Living in a chronically ill body: Mapping women's embodied experiences with long covid (Oxford, UK)

Background. Long covid is a chronic illness in which the symptoms of the COVID-19 coronavirus continue over long time periods. It affects one in five COVID-19 patients. Researchers have framed it a 'silent epidemic' due to its complex health consequences, and the lack of data and follow-up on patients suffering from the disease. Recent studies have found that long covid particularly affects women (Sudre et al., 2020) and according to some studies, up to 60-70 % of the patients are female (Turabian, 2019). Female patients' symptoms are often being dismissed or attributed to anxiety or other psychological origin, also known as the 'gender pain gap' (Cleghorn, 2021; Kolmes & Boerstler, 2020). Data for race and ethnicity of the pandemic and its consequences are also lacking, which hinders documenting health inequities (Krieger et al., 2021). Medical and epidemiological research has sought to understand patients' symptoms, which include brain fog, fatigue, depression, shortness of breath, headaches, cough, fever, and insomnia. These studies are crucial for understanding the broader implications of long covid on the population as a whole and guide policy and clinical interventions. However, more information is needed on the ways that women as the most affected group with diverse backgrounds experience their (ill)health and the ways they respond to their health condition. Objectives and aims. 1) How do women experience long covid and how do these experiences differ depending e.g. on age, race, ethnicity, sexuality or education? 2) In what ways are these experiences related to multimorbidities such as stress, mental health problems, changes in quality of life or capacity to work? 3) How have the women adjusted to their new way of life and how has this changed the way they view themselves?Concepts. The project is situated within health humanities, which help to understand the ways that diseases affect our everyday lives beyond physical health, specifically 1) health geographies, which analyse how health is constituted through the social and cultural environment, how individuals experience ill-health and diseases, and how those different experiences are shaped by power and knowledge (Brown et al., 2018; Dyck et al., 2012), 2) gendered and intersectional perspectives on health arguing that women and men experience illnesses differently (Hankivsky, 2012) and considering the differences of women's experiences depending on intersectional identities (Brown et al., 2019; Browne et al., 2008); and 3) translating health knowledge as an approach to translate experiences with (ill)health and include patients' and clinicians' experiences into health research (Engebretsen et al., 2017; Greenhalgh et al., 2019).Methods. This project draws on 1) interviews with patients and health professionals (n=20) for a broader understanding of the research context (Elwood & Martin, 2000) and 2) body mapping (Gastaldo, 2012; Jokela-Pansini, 2021) (8 workshops, 8 participants per workshop, n=64) as a visual research method. I apply qualitative content analysis (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005) to analyse the data. I use a participatory approach (De Leeuw et al., 2012; Pain, 2004). I have consulted patients on the research design and will engage participants in data collection and -analysis. Results and impact. Understanding the effects of long covid on different bodies and population groups has become ever more important. Studying long covid is particularly interesting in UK where more than a million people are living with long covid (ONS, 2021). The body mapping method, combined with interviews, will reveal new information on how women map and narrate their experiences with long covid. Resulting in concrete visualisations - life-sized drawings of women's bodies - the project will raise awareness of the illness to a broader public through an exhibition combined with discussions with patients and different stakeholders. With its interdisciplinary perspective and collaboration with scholars in human geography and medicine as well as participatory methods, the project will formulate joint recommendations for responding to long covid that consider women's diverse backgrounds.