This edited book focuses on the social aspects and impacts of Long COVID from an international perspective, including contributions from researchers in the UK, Italy, Switzerland, the Netherlands. USA and Australia. The book highlights how Long COVID affects peoples identities, social relationships, life opportunities and inclusion in society. Long COVID, like COVID itself, is a social and political as well as a medical phenomenon. People with Long COVID, from young children to older adults, are confronting ableism, social stigma, exclusion, invisibility and gaslighting. The book throws a spotlight on the struggles over the legitimacy of lay expertise versus medical authority and addresses how people with Long COVID are supporting and learning from each other and engaging in activism and advocacy initiatives. Crucially, most of the authors are themselves living with or caring for someone with Long COVID or work closely with Long COVID patient communities and others with lived experience.
Chapters 1 and 14 are available as Open Access under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License via link.springer.com.
Introduction.- The Social Aspects and Impacts of Long COVID.- Part I:
Knowledge-Making.- Long COVID: The Critical Role of Patient Advocacy-Research
in Disease Recognition.- Long COVID Times: An X/Twitter Informed
Rhythmanalysis of Pacing.- Part II: Medical Responses.- Just Because You
Didnt Detect It, Doesnt Mean Its Not There: Long COVID, ME/CFS and the
Social Dynamics of Biomedical Knowledge Production.- Long COVID Services
between Medical Clinics and Healing Rituals: A Case Study in Switzerland.-
Part III: Biopolitics and Social Determinants.- Long COVID and the
Biopolitics of Pandemic Timings and Endings.- The Profound Societal Impacts
of Long COVID and Pandemic Non-Interventionism.- Equity Amidst Uncertainty: A
Comparative Critique of Multiple Stakeholder Perspectives about Health Equity
for People with Long COVID.- Part IV: Lived Experience.- We Will Not Be
Silent: The Australia Long COVID Community Speak out About the Role of
Epistemic Injustice in Erasing Evidence of Long COVID in Australia.- Living
with the Virus: An Autoethnography of Long COVID as Multilayered
Traumatisation.- The Double Bind: Gaslighting, Cultural Violence and the
Post-Acute COVID Experience.- Part V: Specific Social Groups.- I Have
Disappeared: Long COVID, ME/CFS and Inclusion in Church Communities.- The
Debilitating Discourses of Long COVID: The Public Pedagogies of Sporting
Bodies.- Long COVID in Children, Young People and Families.- Coda.- My
Strange Revelations from Grief and Long COVID: How Caring for My Wife Showed
Me the Horror and Beauty of Loss from Disease.
Deborah Lupton is SHARP Professor in the Faculty of Arts, Design & Architecture, University of New South Wales (UNSW) Sydney, Australia. She is located in the Centre for Social Research in Health and the Social Policy Research Centre. She is a leading health sociologist and has been awarded two honorary doctorates for her outstanding achievements in research.
