Metabolic Reflections
Thinking through Blurring the Line Between Trauma and Diabetes
For the past two decades I’ve spent considerable time thinking about how social and political complexities are tightly interwoven with medical conditions that produce distinct psychological and biological realities. I have looked at these questions primarily through the prisms of comorbidity, such as diabetes and depression, diabetes and HIV, or cancer and HIV, and these studies reveal how interconnected people’s social and emotional lives are to their medical ones (and are, in most cases, syndemic). These arguments stem from a four-sited research study that focused on the lived experiences of low-income people with diabetes, undertaken consecutively since 2006, culminated in a book, Rethinking Diabetes: Entanglements with Trauma, Poverty, and HIV. Throughout the book I describe how the people I spoke with in Chicago, Delhi, Johannesburg, and Nairobi navigate diabetes alongside personal insecurities, violence, the dissolution of social and family networks, limited financial opportunities, often crippling mental illness, and poor access to healthcare.
Why am I mentioning this here? I’ve been thinking a lot about these stories as I have been conducting research on Long Covid and other contested illnesses. Many people describe stressors and traumatic experiences that they experienced preceding illness, or through and, in many cases, because of illness. Through great detail, people describe how their social and biological lives are closely intertwined. In what follows, I share an edited draft of an article published in American Anthropologist about the ways in which social and personal traumas become blurred in metabolic irregularities. Because we live in complex bodies and interrelated worlds, it’s important to think about how these social and biological histories pre-exist and interact with Long Covid, thereby shaping certain experiences and symptoms that have become central to chronic illness experiences.
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Rarely are the impacts of chronic stress and trauma on metabolism recognized in clinical studies of diabetes. Yet, from hundreds of interviews with people living with diabetes, and an expanding body of scholarship in anthropology and epigenetics, I argue that lines between trauma and diabetes are blurred and that violence and subjugation may irreversibly impact metabolism, even across generations. Arguments focused on how trauma is experienced and embodied in diabetes complicate biomedical narratives for what drives insulin resistance; these narratives primarily focus on genetics, weight, and lifestyle. My research has shown that changes to diet and exercise alone will not solve the global and local undercurrents of the epidemic.
Recognizing the impact of social and psychological suffering on diabetes is a question of both the social and the biological. Anthropologists have illustrated that trauma, displacement, and fear weigh heavily on diabetes (1-4), unveiling how violence threatens personal security in private and public spaces and appears to be implicated in diabetes, as well as its frequent companion, depression. Alongside this ethnographic evidence, clinicians and epidemiologists show that chronic stress and multiple traumatic experiences can produce elevated cortisol and inflammation that literally work on human cells to make them insulin resistant (5-6). These pathways show how heightened social stress over a life can get under the skin and be measured in the body. This puts questions of cortisol and inflammation at the center of the diabetes story, calling into question the belief that genetics, diet, and physical movement fully explain diabetes risk and recovery.
[This is a core area of importance for understanding why people are differentially afflicted by post-viral syndromes like Long Covid: when inflammation is already heightened, from trauma, weathering, virus, and/or diabetes, then the inflammation from a new invader (virus) may be amplified and more exaggerated.]
At the same time, we must critically interpret how the black box of stress diverges across contexts. This stress may be communicated using local idioms, somatic symptoms, and even other diseases. Stress may mediate how “risk” for diabetes is conceived and how “adherence” to diabetes care is constituted. As diabetes moves along the fault lines of society and settles among those who are the most geographically and economically vulnerable, understanding how historical and social processes, including racism, produce and perpetuate these disease clusters becomes a priority. [And there is extensive literature on what this looks like for diabetes, as well as acute COVID-19, although these patterns remain little understood for Long Covid.]
Residential segregation and structural racism that foster food insecurity among some populations and not others is one example of how geographic vulnerabilities can define diabetes risk. Historical traumas involving political violence and struggle linked to racist segregation and oppression, such as the influence of apartheid in South Africa or Jim Crow laws in the United States, may fuel diabetes affliction within communities affected by these forms of structural violence (7). These examples show how extreme marginalization can physically siphon people off from certain parts of a geographic place through laws; however, they also have cumulative effects on the body that cannot be dissociated from the higher burden of diabetes-related suffering among those who have experienced long-standing social trauma. This argument is based on a theory of epigenetics, proposing that historical trauma and oppression may be passed through generations, turning on and off certain genes through methylation to change how bodies respond to the worlds in which we live (8). Powerful evidence of the long-term impact of trauma has been measured in the children of Holocaust survivors and families in Congo (8). These changes to biology are reproduced in our children, linking trauma from the past with our present and future (9).
[It is also important to emphasize that Ashanté Reese and Hanna Garth have illuminated the powerful ways in which culture, community, and innovative forms of self-reliance have enabled Black communities to thrive around the United States through innovation and collective uplift, despite the violence of American history and metabolic afflictions.]
Moreover, the salience of past or ongoing epidemics fundamentally shape how people perceive and experience chronic conditions. For example, a powerful finding in my research across contexts centered on the different ways in which people thought about diabetes in their everyday lives (2). This was particularly stark in Soweto—a township in Johannesburg South Africa, where I worked after spending many years working in Chicago and a year in Delhi. In Chicago and Delhi, it was common for people to associate diabetes with stress and depression but uncommon to connect diabetes to infection. Yet, with the powerful legacy of HIV in Soweto—with one in five people living with the virus—it was clear how HIV served as a prism through which people perceived chronic illnesses. I found in separate ethnographic studies how people living with diabetes (10) and/or cancer (11) feared these conditions in part because they feared that their neighbors would think they had HIV (due to similar behaviors like care-seeking, taking medication, and doting family). Many people described how salient HIV was in the community—and how public health professionals for years attempted to diminish HIV stigma by suggesting “It’s just the same as diabetes or cancer.” With diabetes and cancers on the rise, people illustrate the confluence of ideas when they state that they have diabetes to disguise an HIV diagnosis, or conversely, when diabetes produces a stigma-by-association with AIDS (2).
There was some evidence of people linking diabetes and tuberculosis—and this co-morbidity is a growing public health concern. Having diabetes escalates the risk of infection three times for acquiring active tuberculosis when a family member has active tuberculosis—and this risk is particularly high for people living in a poorly ventilated and crowded homes. Although my ethnographic evidence on this link is more sparse, this concern emerged in my research in India, South Africa, and Kenya, and reveals how astutely people are thinking about this convergence as they care for the health of their families and communities (2). This link parallels that of HIV, where the rise of HIV-linked immunosuppression has caused a resurgence of tuberculosis. Diabetes, too, has the potential to exacerbate this re-emerged infection.
Historical, experiential, and epidemiological evidence is insufficient to inform changes to how health systems function. Policy-level influences can have an irreversible impact on people’s diagnosis, care-seeking, and recovery. The notion that someone may have a life-threatening condition such as diabetes can be traumatic for individuals, families, and communities. As diabetes and other non-infectious conditions increase among socially and economically disadvantaged populations around the world, the systematic exclusion of care from some and not others becomes more visible (12). Although I have argued that in some contexts, such as the United States, diabetes may serve as an entry point into the health system to speak about social and psychological suffering (13), recognizing the embodied and entangled relationship of chronic stress and trauma with metabolic conditions is imperative—full stop—to provide holistic, integrated health care for people with chronic illness. Without recognizing the intimate, personal scars from social trauma and violence -- that is often never cared for, despite its crippling impact on people’s lives – the physical scars cannot recover.
[Perhaps this last point is particularly important for people living with Long Covid—where medical care is far from holistic and many people not only carry with them personal scars from the duress of a hard life but also the scars of medical disbelief, medical racism, and a social dismissal of the lived realities of biological disruption.]
References
Carruth, L., & Mendenhall, E. (2019). “Wasting away”: Diabetes, food insecurity, and medical insecurity in the Somali Region of Ethiopia. Social Science & Medicine, 228(March), 155–163. https://doi.org/10.1016/j.socscimed.2019.03.026
Mendenhall, E. (2019). Rethinking Diabetes: Entanglements with Trauma, Poverty, and HIV. Ithaca and London: Cornell University Press.
Page-Reeves, J., Niforatos, J., Mishra, S., Regino, L., Gingrich, A., & Bulten, R. (2013). Health Disparity and Structural Violence: How Fear Undermines Health Among Immigrants at Risk for Diabetes. Journal of Health Disparities Research and Practice, 6(2), 30–47. Retrieved from http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3775498&tool=pmcentrez&rendertype=abstract
Smith-Morris, C. (2008). Diabetes among the Pima: Stories of Survival. Tuscan: University of Arizona.
Golden, S. H., Lee, H. B., Schreiner, P. J., Roux, A. D., Fitzpatrick, A. L., Szklo, M., & Lyketsos, C. (2007). Depression and type 2 diabetes mellitus: the multiethnic study of atherosclerosis. Psychosomatic Medicine, 69(6), 529–536. https://doi.org/10.1097/PSY.0b013e3180f61c5c
Lee, C., Tsenkova, V., & Carr, D. (2014). Childhood Trauma and Metabolic Syndrome in Men and Women. Social Science & Medicine, 105, 122–130.
Thayer, Z. M., & Kuzawa, C. W. (2011). Biological memories of past environments: Epigenetic pathways to health disparities. Epigenetics, 6(7), 798–803. https://doi.org/10.4161/epi.6.7.16222
Thayer, Z. M., & Non, A. L. (2015). Anthropology Meets Epigenetics: Current and Future Directions. American Anthropologist, 117(4), 722–735. https://doi.org/10.1111/aman.12351
Kuzawa, C. W., & Quinn, E. a. (2009). Developmental Origins of Adult Function and Health: Evolutionary Hypotheses. Annual Review of Anthropology, 38(1), 131–147. https://doi.org/10.1146/annurev-anthro-091908-164350
Mendenhall, E., & Norris, S. A. (2015). When HIV is ordinary and diabetes new: remaking suffering in a South African township. Global Public Health, 10(4), 449–462. Retrieved from http://www.scopus.com/inward/record.url?eid=2-s2.0-84924810849&partnerID=tZOtx3y1
Mendenhall, E., Bosire, E. N., Kim, A. W., & Norris, S. (2019). Cancer, Chemotherapy, and HIV: Living with cancer amidst comorbidity in a South African Township. Social Science & Medicine, 237, 112461.
Bosire, E., Mendenhall, E., Omondi, G. B., & Ndetei, D. (2018). When Diabetes Confronts HIV: Biological Sub-citizenship at a Public Hospital in Nairobi, Kenya. Medical Anthropology Quarterly, 32(4), 574–592. https://doi.org/10.1111/maq.12476
Mendenhall, E. (2012). Syndemic Suffering: Social Distress, Depression, and Diabetes among Mexican Immigrant Women. New York, NY: Routledge.