Fishing for Validation: Understanding Promises and Challenges of a Private Social Media Group for COVID-19 Long-Hauler Patients

Abstract

The COVID-19 pandemic has affected more than 301 million people worldwide so far. Many communities (such as minority communities) suffered disproportionately more difficulties throughout the pandemic. In this paper, we would like to focus on one such community: COVID-19 long-haulers community. Long-hauler community consists of people affected by Coronavirus, but their symptoms do not cure in a couple of weeks; instead, they experience lingering symptoms for months. The concerns of this community were initially ignored by health care providers primarily because of limited information. In this paper, we have analyzed the social media discussion of a private Facebook group dedicated to the long-hauler community. In addition, we interviewed the community members to investigate their motivations for joining the group and how the group has impacted their lives as long-hauler patients. Our analyses revealed the primary discussion topics of this community. It also showed how a minority community could stand by each other using social media groups during a crisis. We concluded the paper with long-term implications of our findings for health care systems, policies, and existing literature on cooperative AI.