Rethinking Diabetes: Entanglements with Trauma, Poverty, and HIV

RETHINKING DIABETES

Entanglements with Trauma, Poverty, and HIV

EMILY MENDENHALL

Foreword by Mark Nichter

CORNELL UNIVERSITY PRESS

ITHACA AND LONDON

For Adam,

in thanks for everything you did to support me

in writing this book

CONTENTS

Foreword by Mark Nichter

Acknowledgments

Introduction

1. Syndemic Diabetes

2. Chicago

3. Delhi

4. Soweto

5. Nairobi

Conclusion

Notes

References

Index

Foreword

Acknowledgments

Introduction

1. Syndemic Diabetes

2. Chicago

3. Delhi

4. Soweto

5. Nairobi

Conclusion

Notes

References

Index

FOREWORD

Mark Nichter

One of my key informants in South India between the mid 1970s and late 1990s was an ayurvedic practitioner (vaidya) who had also received integrated medicine training from a medical college in Madras. He was renowned for the treatment of diabetes and was referred patients by both allopathic and ayurvedic practitioners. In the 1970s I watched him treat a steady stream of patients from all walks of life. Most had already been diagnosed with diabetes and had seen several practitioners. Patients typically brought with them the results of lab tests and bags of medications prescribed by other practitioners. I carefully observed his interactions with patients and was struck by the way he treated patients having the same allopathic diagnosis with different types of medicine and dietary advice.

The vaidya observed my interest in his treatment of diabetes and used it as an opportunity to introduce me to an ayurvedic humoral assessment of health problems. Diabetes, he stated, was a very imprecise allopathic disease category, and he expressed concern about a one-size-fits-all biomedical approach to treating diabetes, stating that in his experience this often led to iatrogenic (or treatment-induced) complications. The vaidya diagnosed diabetes patients according to ayurvedic nosology and the diagnostic category of premeha, which encompasses urinary flow disorders as well as diabetes. Ayurveda describes twenty types of premeha, some of which are curable and others are not. Each type is associated with a different type of humoral (dosha) imbalance. Treatment is tailored to both a patient’s dosha imbalance and body type. Individuals who are obese (sthula) or lean (krisha) for reasons related to constitution, food habits, and lifestyle are treated differently, and the vaidya often asked them different types of questions while taking their histories.

One lesson the vaidya was intent on teaching me entailed an understanding of health as a dynamic state responsive to action in the interaction between body constitution, environment, and behavior. When he diagnosed patients, the vaidya took a detailed patient-centered history typically lasting more than an hour. During the consultation, he inquired not only about a patient’s physical symptoms, which he read as signs of dosha imbalance, but also a patient’s food habits and taste preferences, sleep patterns, sources of tension in their lives, and any and all things that might upset their digestion. The vaidya took pains to identify what I came to see as humoral-behavioral feedback loops. This appeared to be more challenging in the case of poor patients than obese middle-class patients, whom he typically had to wean off of a rich diet of sweet and oily foods as well as excessive medicines. An example is a feedback loop experienced by a poor farmer suffering from both premeha and depression-like symptoms. The farmer experienced tension linked to mounting debt he had incurred and to his inability to arrange his daughter’s marriage. Tension resulted in poor sleep and increased consumption of beedi cigarettes and chewing tobacco as a means to do hard labor when he was tired. The vaidya pointed out to me how each of these factors were interrelated and how they all interfered with the patient’s digestion, resulting in dosha imbalance, premaha, and psychological distress.¹ What he did not do was consider factors leading to rising debt among farmers or the proliferation of cheap tobacco products.

This brief vignette points out how noncommunicable diseases (NCDs) are recognized as biosocial disorders locally, and not just by public health researchers and social scientists. As social scientists of health and medicine, it is our charge to look beyond the biosocial disorders of individuals to larger trends. When viewing epidemics of NCDs such as diabetes, we must not only identify the groups at risk and study risky behavior, but also provide a systematic account of environments of risk and agents and policies that foster health disparity directly and indirectly.

Global rates of type 2 diabetes have risen so sharply in the last three decades that there is now debate on whether to classify the condition as an epidemic or a pandemic.² There are an estimated 382 million people worldwide who presently suffer from diabetes (90 percent from type 2 diabetes), with rates of diabetes rising faster in middle- and low-income countries (LMICs) than in the West. In 1980, the global prevalence rate of diabetes was 4.7 percent. By 2014, the global prevalence rate had climbed to 8.5 percent, with rates exceeding 14 percent among some indigenous groups and refugees subject to severe trauma and displacement.

It is well established that rising rates of type 2 diabetes are not merely a reflection of better knowledge and increased surveillance. This rapid rise in cases of type 2 diabetes is associated with both defective modernization and rising levels of insecurity among structurally vulnerable and displaced populations. In the literature, this spike in diabetes cases is most commonly linked to diabesity³ and associated with globalization and industrialization, nutrition transition, the proliferation of obesogenic and other commerciogenic products (e.g., fast foods, tobacco, alcohol), and a sedentary lifestyle. Less often recognized, but equally important as risk factors, are chronic undernutrition and prolonged and pronounced periods of psychosocial stress, anxiety, and depression.⁴ Type 2 diabetes is a preeminent stage four of epidemiological transition and it is contributing to the double burden of noncommunicable and communicable diseases in LMICs.⁵

Rethinking Diabetes shows very clearly how diabetes is rarely experienced as a stand-alone health problem. Aside from causing a wide spectrum of complications (e.g., heart disease, chronic ulcers, blindness), diabetes is comorbid with other NCDs ranging from hypertension and depression to polycystic ovary syndrome and dementia. Diabetes also compromises the immune system, rendering one far more vulnerable to infections such as streptococcus pneumonia, influenza virus, tuberculosis, and urinary tract infections. On the other hand, the likelihood that someone afflicted with HIV will experience diabetes is much greater than among the general population, as a result of insulin resistance associated with both the disease and its standard treatment.⁶

Rethinking Diabetes and other work by Emily Mendenhall argue that it is more productive to think about diabetes in terms of syndemics than of comorbidity or multimorbidity.⁷ This line of critical biological investigation focuses on synergistic, not just concurrent, health problems and societal determinants of chronic ill health. In this book, Mendenhall expands her systematically documented and theoretically rigorous study of diabetes presented in Syndemic Suffering (2012) to reflect on other diabetes syndemics experienced by impoverished populations in different eco-social and cultural contexts. Her most compelling cases involve women experiencing diabetes while trying to make do in adverse conditions. These women suffer high allostatic loads associated with unpredictability in their daily lives, competing demands for resources, gender role obligations, domestic conflicts, and violence in its many forms. For these women, diabetes is experienced and understood as a life (course) lesion⁸ and the result of long-standing and pernicious biopsychosocial weathering. Thus, Mendenhall reminds us that a syndemic approach to diabetes would go beyond the monitoring of blood sugar levels to consider reasons for poor dietary and medicine adherence, sources of psychosocial stress leading to depression, patterns of tobacco and other drug use, and so on.

Rethinking Diabetes is timely and thought provoking. Diabetes is a massive global health challenge for which there is no magic bullet and for which no one-size-fits-all program is likely to be effective. As aptly noted by the vaidya introduced at the beginning of this preface, type 2 diabetes is not a single phenomenon. Mendenhall’s book describes, through ethnographic vignettes in four contexts, how treatment programs will need to be tailored to different types of patients with different needs and access to different sets of material resources and levels of social support. In short, nations preparing to introduce new NCD programs will need to address diabetes syndemics as biosocial epiphenomena.

ACKNOWLEDGMENTS

Most books take years to come together and this one is no exception. I first began asking about the complicated, interlinking experiences of trauma, mental illness, and diabetes in 2007 in the Chicago kitchens of Mexican immigrants with diabetes. The stories, knowledge, and pastries consumed during those curious hours laid the groundwork for this study—and I am most indebted to those twenty-six people who introduced food for thought. Over the course of a decade, I have interviewed hundreds of people in four countries and am indebted to the hours they spent with me as well as to my research assistants. This book would be nothing if it were not for their stories.

The Chicago project would have been impossible without the patience and careful guidance of my mentor at Cook County Hospital, Elizabeth Jacobs. I am indebted to Veronica Delgado Hernandez and Sam Del Pozo, who provided critical institutional and social support, in addition to my administrative friends: Funeka, Audrean, Manju, Pawal, George, and Francisco. Also, I will never forget the kindness and flexibility the clinical staff offered me during my work in the General Medicine Clinic. The research was made possible by generous funding from the National Science Foundation and Northwestern University’s Institute for Policy Research and The Graduate School. Deborah Winslow, Eliza Earle, Katie Clarke-Myers, Tracy Tohtz, Susan Higgins, and Dana Adam Fuller made grant application and management navigable. The Department of Anthropology at Northwestern University provided foundational training at the intersection of culture and biology; thank you especially to Rebecca Seligman, Thomas McDade, and Bill Leonard for your mentorship.

The Delhi project would have been impossible without the unwavering support and guidance of Dorairaj Prabhakaran at the Public Health Foundation of India (PHFI) and the Centre for Chronic Disease Control (CCDC). I was also grateful for the mentorship from Nikhil Tandon and partnerships with Roopa Shivashankar, Shweta Khandelwal, Kavita Singh, Preet Dhillon, and others during my time in Delhi. The work would not have been possible without the research team for the CARRS study and Roopa’s guidance. Our research assistants, Sneha Kamal Sharma and Allam Ashraf, made this research a success by conducting interviews with scientific rigor, patient persistence, and compassion. Others who made this research possible include PHFI and CCDC staff, especially Suma and Kamala. I was supported during this time as a Fogarty International Clinical Research Scholar with the National Institutes of Health. I am grateful for the support of the Vanderbilt University Institute for Global Health for managing this fellowship, including Sten Vermund, Doug Heimburger, Catherine Lem Carothers, Annie Smart, and Sarah Schlachter. Special thanks to Mohammed K. Ali and K.M. Venkat Narayan for selecting me to be Emory University’s NIH Fogarty Scholar and for allowing me the intellectual freedom to do something new. Finally, a special thank you to Lesley Jo Weaver, whose advice on working as an anthropologist on diabetes in Delhi was critical to my success; I continue to value our friendship and collaborative work.

The Soweto project was successful due to Shane Norris’s courage and flexibility to welcome an ethnographic perspective into the Development Pathways for Health Research Unit (DPHRU) at the University of the Witwatersrand. It was a privilege to work with Shane and others who continue the work on the cohort study initially known as Mandela’s Children. I was also grateful for the guidance from other postdoctoral fellows, including Alison Feeley, and staff, including Prisha, Jorris, Nelson, Rhulani, Thabile, Lisa, and Mat. Mama Hunadi Shawa and Meikie Hlalele assisted with eight interviews conducted in Soweto with individuals who preferred their native language to English. Mama Hunadi also recruited women to speak with us, managed logistics, and engaged with me in lengthy discussions about women’s stories. The research and opportunity to work with DPHRU would have been impossible without the financial support of South Africa’s Medical Research Council and the support and flexibility of the research team. Finally, our time in South Africa was made especially sweet by living with the Mallen family and running with Team Kudu.

The Nairobi project was successful on account of the seamless support from David Ndetei and Victoria Mutiso at the Africa Mental Health Foundation (AMHF). I am indebted to Abednego Musau, who played a fundamental role in getting the research off the ground. Edna Bosire, Gitonga Isaiah, and Gregory Barnabas Omondi are three researchers who went above and beyond the expectations of this project. They are intelligent, committed, and fun to be around—it is a privilege to watch their careers take off since our first time working together. It was their curiosity and commitment to the project that enabled us to move quickly from data to publication and to engage deeply. The research was made possible by my generous start-up research funds from the School of Foreign Service at Georgetown University—I am especially appreciative of the institutional support from Jennifer Long, Obdulio Moronta, and Nicholas Starvaggi. Notably, my family is indebted to Kate and Oliver Sabot for opening their home and filling our bellies with a great deal of laughter, adventure, and good food. A special thanks to Jane for caring for our little Fiona during our months in Nairobi.

Amidst the multisited research was a strong network of scholars who have influenced the ideas in this book. There will never be enough thanks for Peter J. Brown, who first introduced me to medical anthropology and continues to be a treasured mentor. My cadre of colleagues and friends whom I met over a decade ago at Emory University continue to inspire and shape my research and intellectual growth, including Sarah S. Willen, Erin Finley Garcia, Kenneth Maes, Jed Stevenson, Svea Closser, Brandon Kohrt, Ryan Brown, Sarah Raskin, Lesley Jo Weaver, and Jennifer Kuzara. Other medical anthropologists who have been especially kind to think through these ideas with me include Sara Lewis and Lauren Carruth.

My new academic home, Georgetown University, welcomed me with open arms and has become a bastion of intellectual growth and political engagement. I am grateful for my wonderful colleagues in the Science, Technology, and International Affairs program, including Mark Giordano, Joanna Lewis, Kathy Olesko, Sarah Stewart Johnson, and Rajesh Veerarahgavan. I have been privileged to engage and learn from my colleagues in African Studies, and especially Lahra Smith, a collaborator and friend. Moreover, the Department of Anthropology has provided a warm welcome and continual friendship. The global health community that spans the campus has also been an important cornerstone—special thanks to John Monahan for engaging repeatedly to discuss global health policy. Finally, this project would have been inconceivable without the loving support for my kids by the wonderful staff at Hoya Kids Learning Center. I want especially to thank Jane, Susan, Molly, Sarah, Liz, Todd, Yanka, Mary Kate, Aleria, Tanya, Vikki, Jenn, Sharon, NuNu, Chris, Katie, and Hannah.

A group of incredibly insightful scholars pushed this book from a collection of four discrete ethnographic case studies into an integrated story. Thank you Lenore Manderson and Janet McGrath for your critical push for a major rewrite and extensive comments. Thank you to Abraham Newman and the Mortara Center for International Studies at Georgetown for financing a book workshop and to Janet McGrath, Heide Castañeda, Daniel J. Smith, Lauren Carruth, Lahra Smith, Sara Lewis, Rajesh Veeraraghavan, Brandon Kohrt, and Jennifer Huang Bouey for engaging in a full day of constructive and clarifying critique. Also, thank you to Jessica Yen, H. Stowe McMurry, and Shelby Rowler for jumping in to help me at critical moments.

There will never be enough thanks for my family. My parents, Walter and Barbara, set a high bar for what incredibly supportive parenting can be. Kate and Zach are unfailing in their support—and especially in their encouragement to turn it off and jump in Lake Okoboji. My Aunt Abby read numerous versions of what is in these pages. Many others challenged me to think about the questions in this book. Most importantly, they encouraged me to flip off my computer to enjoy a sweaty hike, a swim in refreshing waters, a good book, and stimulating conversation.

Adam is the type of person who makes me laugh so much my stomach hurts. Belly laughs, parenting, travelling, researching, writing, hiking, thinking, kayaking, drinking wine, taking a run, or taking a break—everything is better with you. I am so lucky to share these things, as well as our continuous dialogue and work together around the world, which is the essence of the pages in this book. Along the way, welcoming our little people, Fiona and Zoë, has been the source of incredible love and resounding joy. May they see in their lifetimes a safer, more just world for women, our planet, and humankind, everywhere.

In what follows, all errors are mine alone.

INTRODUCTION

Esther

Esther awoke with the sun, paid the bus fare, and arrived early as the gate opened at the district hospital. Patients milled around the specialty clinic waiting room—a porch nestled within tall beams and a tin roof. Esther sat outside along the dusty path that wove through the hospital compound. Some, like Esther, were there seeking care for their diabetes. Some had tuberculosis. Others had cancer. They sat together on the closely spaced benches as cool breeze chilled the air. She wrapped her blanket around her tightly and looked at the other patients.

Esther edged away from her neighbor, who had started coughing. She worried he had tuberculosis—something she should not catch, as she was taking antiretrovirals (ARVs) for HIV, and now diabetes symptoms were making her feel sick. In the past year, Esther suffered from bouts of malaria and typhoid as well. These acute infections complicated her severe and at time disabling depression, which washed over her during the most difficult times.

Much later in the day, Esther spent hours sharing her story in a quiet open-air tent outside the clinic. The tent was situated on the edge of the medical compound on a grassy knoll. From her perch, the specialty clinic was in sight, and by darting her eyes she saw the stand-alone building for patients who were HIV positive. She had received antiretroviral therapy (ART) there during past visits.

Esther was born in 1962 in rural western Kenya to a Kikuyu family of humble means. She lived with her mother, father, and twelve siblings in a small traditional home. When her father died of alcoholism when she was in primary school, her situation changed dramatically and forced her family off their land. Esther explained that her father died before he got a share of his ancestral land. This drove her family into absolute poverty and homelessness. Her mother moved the family to a coffee plantation and tea farm, what she describes as the white settler’s lands, to look for work; there, they were given tents or temporary houses for workers. Few of Esther’s siblings showed interest in school, and she was the only one to complete five years of free primary education. She spoke longingly of one teacher who encouraged her to complete her schooling. Like her other siblings, however, Esther was needed to earn money to support her family, and eventually she joined her siblings in the fields. She recollected that her mother did not want to lose labor in the farms.

Esther left the rural area for Nairobi in her twenties. Her mother remains in a rural area with six of Esther’s living siblings; six others died years ago from AIDS. Many were infected in the 1980s and 1990s, years before ART became widely available for treatment of those with HIV. Such treatment was especially difficult for low-income families like Esther’s. She explained, One of my sisters got HIV when she was in standard seven [one year before completing primary school]. She decided to get married, but unfortunately she got infected with HIV. She later died. Esther stated that it was by caring for her sick siblings that she became HIV positive. She went on: You see, in those days there were no ARVs and people did not have knowledge about how to prevent HIV transmission. After my sisters died, I got tested and I was diagnosed with HIV. Esther took her time with this memory, slowly revisiting the historical trauma and personal devastation inflicted by the AIDS epidemic on her family.

Esther fell into a deep depression after she was diagnosed with HIV. She noted that she felt hatred toward herself before she learned to accept her status. Esther entered a program to help others living with and grieving HIV and AIDS.¹ She became a community health worker through a European nongovernmental organization (NGO). In this work, Esther would help those people infected by HIV and create awareness. She became one of the many HIV-positive volunteers who give their time and energy for little (and, in some cases, no) pay. Esther was paid 2,000 Kenyan shillings per month ($20). She used this money to buy food for the sick and poor people, because even with the introduction of ARVs, some patients were so poor and bedridden that they could not have food to eat before they took their medications. So, I bought them food.

During this time Esther married and had four children. After fifteen years, however, Esther’s marriage dissolved abruptly, the result of an infidelity that left indelible marks in her life. Her husband took advantage of her younger sister, and they had a child. This hurt her deeply and, as tradition requires, Esther reported it to her in-laws’ family. The family decided that they would take in Esther’s younger sister as a co-wife because Esther’s husband had enough money to support them both. Esther was devastated by both the infidelity and the violence against her sister. She said, I could not accept this and I decided to leave with my four children and start my own life. She left her sister with her husband.

This is when Esther first moved to Kibera, the largest slum in the African continent. She worked there as a bar attendant for eight years and was able to educate my children up to standard eight, which was the completion of primary school. She regretted that her children could not continue to secondary school because she had too little money to pay for their fees. Eventually, Esther met a man with whom she moved in and had three more children. At 52, she was determined for these three children to complete their secondary schooling.

Esther moved from Kibera to another low-income Nairobi neighborhood when she remarried. However, personal security in her new neighborhood proved to be a constant struggle. She said that security is not so good mostly because of theft issues, because boys are criminal and they steal from people. There were also serious issues related to gun violence that fostered chronic stress, as shown by her statement that about seven of the boys were killed last year. They had guns that they used to terrorize people.

As many women do, Esther felt these social experiences deeply within her body, explaining: All these things were so stressful that I developed wounds in my stomach. Like before, when she had struggled with the loss of her siblings, Esther found a counselor to speak with: It took me about two years before I accepted my situation. I think I realized that in every situation, I had to accept my background and even my destiny. I did not choose to be born by poor parents. I was born there by accident. I had to accept all these things in my life.

Esther tested positive for HIV in 2002. At that time, however, she was healthy. After two years, she began taking Septrin, a broad-range antibiotic often used for diarrhea and urinary tract infections. Six years later, her CD4 count fell low enough that she began ART. She was also dealing with a noxious herpes outbreak and sought treatment. By 2008, ART was largely available in Kenya, and she was treated free of charge. The free clinic provided a comprehensive exam, including a blood test. During this appointment Esther discovered that she had diabetes, too. She went on to explain: "They only gave HIV services and treatment for free. Other diseases such as diabetes are paid for [by the patient]. This is making my life difficult because I