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Paper short abstract

Understanding how knowledge is co-produced and circulated, whose knowledge base is (in)validated and whose voices are acknowledged/silenced, while focusing primarily on people living with complex chronic conditions such as Long COVID and associated conditions.

Paper long abstract

India, the country with the highest population, previously reported high infection and mortality during the global outbreak of the COVID-19 pandemic, and has left millions of people unattended who are living with complex chronic conditions, such as Long COVID and associated health conditions. Even though many are suffering from legitimate chronic conditions and debilities, people with evidence-based morbidity are generally prioritised, while those who fail to get a proper diagnosis are left to negotiate their way on their own, choosing between the currently overwhelmed public healthcare system, private care, or other pluralistic healing approaches. Due to inadequate research and lower prioritisation by public healthcare agencies, the existing guidelines, research, and reports are proving inefficient in translating care into the practice of medical practitioners, increasing the burden on the healthcare system without assuring recovery. While a sizeable proportion of the population is trying to increase visibility through media reporting, digital activism, and individual advocacy, the deep-rooted epistemic inequality in knowledge production is creating a contested terrain of marginalisation and subversion. Based on an ethnographic study in Delhi on people living with chronic illnesses after COVID-19 infection, interviews with healthcare professionals, and advocacy channels situated for the Indian population with Long COVID, this study seeks to understand how contested power creates knowledge, why the logic of biomedicine leaves people unattended after a failed diagnosis, and how patients and professionals negotiate care amidst uncertainty.