Long COVID and chronic pain: overlapping racial inequalities

Abstract

The American Public Health Association (APHA) and prominent U.S. health organizations have acknowledged racism as a central cause of health inequality. In the midst of the COVID-19 pandemic, the U.S. confronts an additional public health crisis: mass impairment from Long COVID. Occupational segregation and institutionalized racism have made working-class Black, Indigenous, and people of color (BIPOC) more likely to experience Long COVID. Medical gatekeepers also prevent equal access to health: BIPOC face more obstacles in their search for disability accommodations and social support. To provide health equity to the Long COVID community, Disability Studies must confront racialized understandings of chronic pain and the consequences of these meanings by centering the lived experiences of BIPOC living with chronic pain.

Keywords:

• Long COVID
• chronic pain
• disability justice
• racial inequality
• health inequality

A sociological perspective on long COVID

There are many reasons sociologists might consider COVID-19 the most socially-significant disease of our generation. Americans receive daily messages about COVID-19 from our families, peers, workplaces, and institutions. Even the absence of naming COVID-19 (or naming it less often) in the current trend toward resuming normality sends an important message. Despite the pressure to resume ‘business as usual’, in the U.S. we have lost over one million lives thus far (CDC 2022). Further, COVID-19 is an instance of mass impairment in that about half of the 48 million survivors experience Long COVID (Mason 2021). Long COVID is defined as a range of new, returning, or ongoing health problems lasting four or more weeks after first being infected with COVID-19 (CDC 2021a) with predominant symptoms of chronic pain, headaches, fatigue, and difficulty thinking or concentrating (‘brain fog’). Some disability justice advocates and specifically, Imani Barbarin (a disabled Black author and educator with a large following on TikTok) argue that COVID-19 is also a mass disabling event as American institutions have done little to accommodate this newly-impaired segment of the population. Importantly, Long COVID has been categorized as a disability under Sections 504 and 1557 by the Americans with Disabilities Act since July of 2021 (ADA; HHS 2021).

Long COVID does not naturally discriminate because COVID-19 is equally as contagious across gender, race, and class categories. (Long COVID is more susceptible to individuals with disabilities and chronic health conditions – predispositions based in more physical, bodily conditions.) In the U.S., working-class Black and Brown people are more likely to test positive for COVID-19 as well as to die from it (CDC 2021b). These inequalities result from racial capitalism (Pirtle 2020) which structures who gets to work from home (predominantly white, middle-class people) in addition to a range of other cumulative health vulnerabilities including (but not limited to): unequal access to quality and preventative health care; population density; limited opportunities for fresh and healthy food; exposure to environmental hazards; education inequality; and mass incarceration.

It is critical that Disability Studies does not remain value-neutral while developing understandings of Long COVID. Scholars must utilize a disability justice framework to develop anti-racist research and policy for Long COVID. In this article, I discuss the utility of sociological and disability justice frameworks for identifying social causes, consequences, and responses to Long COVID.

Social understandings of chronic pain

The way that a society understands a specific health condition affects the way it is treated, both medically and socially (Conrad and Barker 2010). In the United States, one in five individuals (20.5 percent of the population) experiences chronic pain (Yong, Mullins, and Bhattacharyya 2021), although chronic pain is not often treated with a sense of urgency. Rather, diagnoses of chronic pain are deemed lower status and less important, so patients’ concerns are often minimized by medical professionals (Kempner 2014). Long COVID is an ‘invisible’ illness that lacks specific, cohesive biological markers, making it medically and socially similar to conditions of chronic pain. Social constructionists understand these ambiguous invisible conditions as contested illnesses: illegitimate, ‘medically-suspect’ health conditions that many physicians do not consider distinctly medical. This forces individuals to look outside of the medical institution for relief, creating unequal opportunities in the healing experience. Long COVID, chronic pain, and disability are each social processes resulting from bodily impairments which are mediated by systems of race, class, and gender.

My broader research project explores the ways that inequalities and systems of oppression are perpetuated in the experience of fibromyalgia, an invisible chronic pain condition that causes widespread pain, fatigue, sleep problems, and mental distress (Amigues 2019). Disability scholars (Clare 2017) and sociologists of health (Conrad and Barker 2010) argue that while the body has an impairment (a physical attribute), society creates the disability, the social meanings and experiences associated with an impairment (Oliver 1996). These meanings are tied to larger systems of gender (Nelson 2015), race (King 2008), and class (Coburn 2004). Furthermore, social psychologists show us that in instances of ambiguity, individuals are more likely to rely on stereotypes (Schwalbe and Mason-Schrock 1996). Racist stereotypes frame the COVID experience (Ho 2021), chronic pain (King 2008), and disability more broadly (Sins Invalid 2019). An intersectional analysis allows researchers to see the social connections between Long COVID and chronic pain: social systems allow some individuals to receive legitimacy and treatment while excluding others altogether.

Social consequences of chronic pain

Across all backgrounds, many of the most debilitating effects of chronic pain are social – encountered at the structural and interactional levels (Martin 2009). Here is where Disability Studies can analyze how (dis)ability intersects with gender, race, and class. Research on chronic pain points to evidence that racially-marginalized groups suffer disproportionately from unrelieved symptoms as a result of: unequal access to health care; misperceptions in the severity of pain during the doctor-patient interaction; unequal access to information and patients’ associated attitudes, beliefs, and behaviors; and provider values and understandings about chronic pain (Shavers, Bakos, and Sheppard 2010). Disability Studies must emphasize the pre-existing racial disparities in the experience of Long COVID, where working- class BIPOC will be more likely to experience the condition while simultaneously less likely to receive a formal diagnosis, disability accommodations, and social support.

The U.S. mainstream medical model of chronic pain places the burden of proof on the individual (Dumit 2006) while simultaneously presenting structural barriers to legitimize this pain. Structural racism in health care functions in part through medical gatekeepers: in order to receive treatment and potential disability accommodations, most U.S. institutions require a formal medical diagnosis. Unfortunately, access to a diagnosis is mediated by insurance companies and the medical practitioners themselves. Racial inequality is greater than just individual attitudes: racism is perpetuated within interaction, in part by the deployment of stereotypes, which inform practitioners’ subjective assessments in the form of medical doubt. These gatekeeping mechanisms reproduce health inequality and unequal outcomes for individuals’ healing. Receiving a formal medical diagnosis for chronic pain not only legitimizes clients’ subjective daily experiences (Barker 2005) but also presents new opportunities for symptom management and the ability to secure financial resources, such as Social Security benefits. Structural-level social processes shape individuals’ opportunities for wellness in chronic pain conditions and social interventions are necessary for racial and health equity.

Social progress for chronic pain

Classifying Long COVID as a disability under the ADA is a crucial first step in establishing structural and institutional legitimacy for Long COVID as it presents an opportunity for individuals to receive institutional accommodations. However, racism (and other systems of oppression) ensures that only those with the privileged social positionings have the opportunities to maintain their health and find relief (Sallinen et al. 2012). Therefore, disability scholars must center disabled, working-class BIPOC in Long COVID research in order to best understand the most severe consequences of the condition and to advocate for an equitable public response. Americans have already observed some of the benefits of flexible working hours and remote opportunities (U.S. Census Bureau 2022). Collective access begins when this opportunity – and all opportunities to access health and healing - become available across all social categories. Incorporating frameworks of disability justice within Long COVID research can encourage legislators to shift current public health policies toward a system of community care in which society is treated as the patient and accommodations are quickly implemented and widely distributed.

Social institutions are responsible for providing healing which can be achieved by implementing needs-based and health-centered policies and practices. Queer, working-class, BIPOC have spent decades advocating for structural solutions to create a more caring society. Healing justice, a movement and a concept created by disabled, working-class BIPOC, critiques unequal opportunities for healing while simultaneously normalizing disability (Lakshmi Piepzna-Samarasinha 2018). As a response to burnout, inaccessible medical care, and ableism, healing justice reclaims ‘traditional methods of healing and redefine[s] what healing and health could mean’ once structural barriers are removed (Lakshmi Piepzna-Samarasinha 2018: 98). In practice, healing justice is displayed and advocated for by Sins Invalid, a BIPOC- and LGBTQ-centered disability justice collective, which uses education and performance to challenge taken-for-granted understandings of disability. Sins Invalid emphasizes intersectionality, interdependence, and the ways that disability and humanity coincide: how creativity and disability culture can thrive in a culture of community care. Through cross-movement solidarity, Sins Invalid strives for collective access and collective liberation by highlighting the intersections between disability and other forms of oppression.

Disability Studies cannot be race-neutral in the response to Long COVID: as a field, it has the social responsibility to conduct intersectional, interdisciplinary, multiple-methods research which addresses how racism is perpetuated in the experiences of Long COVID, chronic pain, and disability more broadly. Researchers must recruit samples from diverse racial and class backgrounds, framing disabled people and chronic pain sufferers as experts of their subjective experiences. Disability scholars can provide accountability and transparency to our communities through open-access publications, on-going dialogues, and practical social applications. My hope is that in this critical historical moment, disability scholars and advocates will mobilize to address the systems which keep BIPOC in chronic pain.

Disclosure statement

No potential conflict of interest was reported by the authors.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.