Theorizing forgotten crisis publics: COVID long haulers’ information marginalization

An estimated 400 million people live with long COVID. Long COVID is a chronic condition with more than 200 symptoms, many of them debilitating. Alarmingly, there are no universal treatments or cures, and research communities have inadequately addressed the communicative practices and information needs of COVID long haulers. We extend theorizing on forgotten publics and information marginalization through a cross-disciplinary, mixed methods study. We conducted a survey of 135 COVID long haulers in the U.S. and 29 follow-up interviews. Findings reveal that COVID long haulers have experienced four contextual conditions that lead to information marginalization: information accessibility, information trust, knowledge, and confidence. These contextual conditions contribute to the information barriers that COVID long haulers face: (1) challenges in accessing information, (2) psychological barriers, (3) low quality information, and (4) lack of social support. In response, COVID long haulers engage in a variety of defensive information practices, including doing their own research, joining support groups, sharing lived experiences, self-advocating, bending the rules, and giving grace to build resilience. Overall, this study extends public relations and information studies theory, offering insights into supporting marginalized communities during and after crises. • Millions of people live with long COVID, a chronic condition with more than 200 symptoms and no universal cures or treatments. • We surveyed 135 long haulers and interviewed 29 respondents about their information behaviors during and after the pandemic. • Participants have engaged in various defensive information practices, including doing their own research & bending the rules. • Participants face many barriers, such as information access challenges, psychological barriers, & lack of social support. • Findings extend theory on forgotten publics & information marginalization,informing support for marginalized communities.