Framing Long Covid through Patient activism

new article in Social Science and Medicine

One of the great privileges of being a university professor is when you get to work with brilliant students. Ken Kaplan graduated in 2023, after living with Long Covid through most of his last half of university. During this time, he closely chronicled his lived experience with Long Covid while interviewing others. This research contributed to our collective writing in Scientific American focused on brain fog as well as a new article on the framing of Long Covid, which was just published in Social Science and Medicine. This article is open access for now— take a look and let us know what you think in the comments. The highlights and abstract are included below.

Photo by Hans-Peter Gauster on Unsplash

Highlights

• Naming Long Covid through diagnosis is a significant form of legitimacy for patients.

• Clinicians hesitate to diagnose Long Covid due to lacking a clear ‘sign’ and the heterogeneity of clinical presentation.

• Recognizing disability from Long Covid is a form of deservingness.

• Other communities of suffering can inform advocacy, policy, and research for the Long Covid.

Abstract

In 2020, when COVID-19 patients first recognized their complex and progressive symptoms, patient activists defined “Long Covid” on social media. While patient support groups are by no means new, the predominance of online support groups and those leveraging the power of social media has become a defining characteristic of Long Covid. In this article, we argue that naming Long Covid served as a powerful conduit of legitimacy for patient activists in media, medicine, and policy. We conducted 57 in-depth qualitative interviews with patients (n = 22), clinicians (n = 20), and policy and academic experts (n = 15). We found naming was not a primary area of contention. In contrast, patients found pride and a sense of identity within the terms. Many clinicians struggled with diagnostics because Long Covid lacks clear biological tests, while patients were consistently disappointed by the lack of positive tests and clarity around their symptomatology. The heterogeneity of the Long Covid experience, as well as the diversity of symptoms, further provides opportunities for contestation and disbelief among clinicians and policymakers not only in diagnostics but also in disability rights. Thus, the power of patient activism has transformed how the condition is perceived among and between patients, clinicians, policymakers, and the media in unprecedented ways that will likely have longstanding impacts on how IACCs are viewed in medicine and the public alike.