Is Long Covid an Idiom of Distress?

Thinking about the cross-cultural experience of illness

Interpreting illnesses through the lens of culture and society has long been the project of medical anthropology. I have been thinking through this lens in relation to the interviews I’ve conducted with people living with Long Covid as well as other chronic illnesses that have a similar nature and lack of a clear biological marker. In many cases, such conditions are characterized by, at least in part, extraordinary fatigue, imbalance, memory inconsistency, and numbness. I have argued in other posts how American experiences with complex chronic conditions are long confronted with doubt. I have been thinking about what ways is this doubt culturally constructed. How does it affect those living with these conditions that are real and painful as opposed to imagined?

On the one hand, fatigue is a global phenomenon. Nearly one in four people worldwide experience some fatigue, and one in ten experience some form of disabling fatigue that lasts more than six months and therefore is considered chronic. Fatigue is not something attributed to one thing; in clinical contexts, fatigue is understood based on duration, severity, and a constellation of other diagnoses. In life, fatigue is imbued in complex social relationships, emotional pain, somatic symptoms, and biological memories. However, how such experiences are defined, interpreted, and experienced differ from place to place.

On the other hand, I have argued on this blog that neuroscientists suggest that symptoms like fatigue reflect a combination of many things, perhaps triggered by one thing (like SARS-CoV-2), with an underlying history of previous infections that have lingered in viral reservoirs, traumas that have irreversibly affected the body, and chronic stressors that may be anything from micro-aggressions to insulin sensitivities. Half of people who experience chronic fatigue for several months or years have experienced one or more of the following diagnoses: infections, anemia, thyroid dysfunction, diabetes mellitus, and cancer. Yet, clinicians find these data inconclusive to predict what may have triggered chronic fatigue – a syndrome that is complex and often relegated to psychology when in many ways it is culturally embedded as well as biologically real.

Two core concepts in anthropology have been attributed to this type of thinking. The earliest theory of culturally bound syndromes was written about Byron Good in 1977 to convey how psychiatric and somatic symptoms emerge in a particular way within a specific society or culture. An emphasis of this theory—potentially constructed through Good’s own cultural prism of American medicine—was the idea that there were no identifiable biological origins, and the disease was not recognized in other cultures. It is a useful one in particular when thinking about how constructs like Long Covid emerge within and between contexts, and how ways of thinking about the self and the world may cultivate different interpretations of diagnoses in different places. For instance, some argue that ME/CFS is a culturally bound syndrome.

Yet, the idea irked medical anthropologist Mark Nichter, who a few years later published a theory of idioms of distress. What bothered Nichter was the over essentialization of culture in a theory of cultural bound syndromes. Instead, he suggested that culture is not static but culture is fluid and changing in relation to local, regional, and global influences. In this way, bodily idioms of distress (such as fatigue or chronic pain) were interpreted as a somatic language for distressing experiences in a culturally meaningful way. In other ways, such language may convey how psychosocial stress becomes transduced into physical symptoms. The concept has been written about extensively across contexts, particularly through the idiom thinking too much, which is experienced around the world but somewhat differently in each context.

I have been thinking about how such framework might inform how people experience Long Covid globally—a diagnosis that has been transported around the world but might mean different things in different places. In many ways, this argument aligns closely with what I have argued about diabetes. In Rethinking Diabetes, I argued that diabetes was defined, interpreted, and experienced differently across contexts in part because people differ in the ways they think about self and society, illness and disease, modernity and money. In this work, primarily with very low-income people living with a chronic illness, I argued,

“These narratives exemplified how diabetes was a function of poverty and structural violence and how social traumas and psychological suffering were deeply embedded not only in insulin resistance as a biological marker of diabetes but also in diabetes as a social and cultural experience” (Introduction, p10).

This point is important because I argued that diabetes is a cultural construct in part because it is not experienced or interpreted the same everywhere. However, a significant difference is that according to international diagnostic guidelines, the diagnosis of diabetes is somewhat similar in all places practicing biomedicine. Yet, cultural and societal differences that frame how people live well with diabetes, and those who are more inclusive of living with a sick role tend to do better. A similar argument is made in Our Most Troubling Madness in relation to psychosis.

Long Covid is framed by cultural context and the historical moment in which it has emerged. This has been clear in the interviews I’ve conducted about Long Covid. Often, people not only tell their narratives to explain their suffering to others but also to use narratives to make sense of illness for themselves. Many narrative theorists, like Jerome Bruner, have argued that individuals navigate through past, present, future, and even imagined lives and selves to cultivate illness narratives that make sense through their cultural prism. These identities become central to how people conceptualize who they are amidst illness and how life events become embedded and expressed in current conditions and perceptions of the self.

Now it might seem like I’m getting into a bunch of theoretical mumbo jumbo. That is not my intention. There are several ways in which the illness narratives I’ve witnessed convey Long Covid as an idiom of distress or culturally defined syndrome. First, a COVID-19 infection is often the starting point of intense physical and emotional pain, weaving together the social and psychological distress of quarantine or living through an epidemic with the onset of illness. Second, people use Long Covid to sort through the cumulative trauma, stress, distress, illness, infections, or potentially other factors that may have led to this moment of debilitating pain and imbalance in/of the body. This is a theory of compounded insults: where COVID-19 infection (multiple, for some people) is the tip of the iceberg. Third, I think Long Covid in America is a uniquely American experience because of the high cost of healthcare, commonness of doubt that the condition is real among medical providers and society, and longstanding dismissal of the condition of ME/CFS.

ME/CFS is an interesting illness for thinking about the intersection of experience and biology because it is a diagnostic category that largely explains a collection of unexplained symptoms. Most people I spoke to described the difficulty of doing what before their illness were simple tasks, like taking a shower, walking to the mailbox, or picking up groceries. The intensity of exhaustion fluctuates through time, and many people prevent flare-ups by pacing—meaning treading carefully with their energy. However, living with ME/CFS in a cultural context characterized by productivity and efficiency is what makes surviving this condition particularly challenging. Work life has become a central identity in American culture so loss of self in relation to the economy for some is as much a loss as debilitating fatigue.   

ME/CFS differs in symptoms and severities over time and between people. For instance, many people struggle to sleep, staying awake all night due to anxiety, restless legs, or numbness. Others struggle with memory, from short term to long term, and there is a variance in what types of memory and confusion people experience. While some people may present with a form of dementia, others struggle with word recall. Many people feel pain in the joints and the muscles and experience migraines or constant headaches. Some people experience night sweats. Many patients experience depression, and many clinicians find this a defining feature of ME/CFS. However, many patients argue that the somatic complaints are primarily viral or social in nature. In part, this determination is working against a common phrase mentioned by clinicians (either directly or indirectly) that ME/CFS is “all in your head.”

Thinking about the differences between ME/CFS and Long Covid makes this point clear. Many have argued that Long Covid might have been catalogued as ME/CFS among some patients (particularly Long Haulers) who experience extraordinary fatigue. However, while others who experience ME/CFS could develop the condition from myriad sources (a virus, bacteria, trauma, or toxicity—and most likely a combination of these), the association with COVID-19 makes Long Covid indisputably unique. In this way, Long Covid does not differ from ME/CFS necessarily because of the virus because etiologies vary and are often unknown among people living with ME/CFS. Instead, Long Covid differs because of the social, cultural, and political environments in which people are living it.  This means that the financial commitments to Long Covid frame how people perceive the conditions, and the ways in which biomedicine cares for people with chronic and contested medical conditions profoundly affects not only their pain and somatic symptoms but also their mental health. 

Why does this matter for understanding Long Covid? Culture manifests in illness narratives of people living through Long Covid not only because the way they think and interact based on the contexts in which they lives frames their experience. There is also a distinct culture of COVID—a cultural framework that is both global and local, physical and emotional, real and imagined. The cultural framework of the Covid Era cultivated a deep fear, social isolation, distrust, and complex shift in societies around that world that cannot be dissociated from the prolonged and complex version of the illness. I think we will begin to understand how the cultural constructions of the distress during the COVID era has opened up an illness category that will only grow and deepen as more people are affected.