In the Kingdom of the Sick: A Social History of Chronic Illness in America

by Laurie Edwards

  Weeks and months went by, and McLaughlin’s improvement was minimal at best. She still slept several hours each day, only dragging herself into class half-days and often fainting when she was there. She could barely walk but tried to attend dance class anyway, only to fall asleep on a pile of mats in the corner. Her blood tests came back abnormal but not definitive, and as the months went on a variety of diagnoses were handed to her: chronic mono, Epstein-Barr virus, chronic fatigue syndrome (CFS), chronic fatigue and immune dysfunction syndrome (CFIDS). For each she was told there were no treatments, and the approach was reactive, treating symptoms and not causes. If she caught an infection—which was a regular occurrence—she was given antibiotics. If she had severe migraines, physicians prescribed migraine medication. When her extreme fatigue become even more overwhelming, they told her to get more rest. No one could explain how to make her better, and, just as frustratingly, no one could explain to her what had made her sick in the first place.

  While the details vary, her physical manifestations and diagnostic roadblocks could stand in for the experience of millions of Americans over the past few decades. The history of CFS/CFIDS and related “nebulous” conditions in this country is a controversial one; even now, consensus over its name is lacking, and although many advocates of the disease fight for education and awareness, detractors remain. In Encounters with the Invisible, CFS patient Dorothy Wall calls the condition “so blatantly unmedicalized, so subjective, another one of those so-called ‘functional illnesses,’ like irritable bowel syndrome, that have always plagued medical practitioners, presenting symptoms with no known cause.”1 From dissent over labels and diagnostic categories to research dollars and clinical trials, the combination of politics, science, and policy is a potent one.

  In All in My Head, Paula Kamen focuses on the other phenomenon at play, one as relevant and entrenched in attitudes today as it was in centuries past: If you cannot cure the patient, then blaming the patient often follows suit. When we don’t understand the source of the problem or how we can alleviate it, “the more psychological, spiritual, and moral meaning it takes on.”2 History reveals the foundation of this current pattern, as we will see, but when physicians adopt this mindset, it is particularly harmful. In comparing nineteenth-century tuberculosis and late-twentieth-century cancer, Susan Sontag wrote, “Any disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious.”3

  This applies to chronic illness, too. We do not like being reminded that there are still limits to modern medicine, and that named conditions exist that might not kill us but will not go away. But if we add to this scenario those illnesses that we can’t name or file under International Statistical Classification of Diseases and Related Health Problems (ICD-10) codes on medical billing forms, conditions we can’t put under our high-powered microscopes or see on advanced imaging tests, then the fear—and, often, distaste—grows. Perhaps if the symptoms can be explained away by claiming the patient is just lazy, or is not making appropriate lifestyle changes, then blame can replace the other niggling emotion: Maybe if it can happen to him or her, it could happen to me.

  And likely, it will happen to many people at some point in their life. Chronic illness affects nearly 50 percent of the population. By the year 2025, it is estimated that chronic illness will affect some 164 million Americans.4 Some of the most common are heart disease, diabetes, cancer, and asthma, but that list is by no means exhaustive. Arthritis, lupus, multiple sclerosis, Crohn’s disease, colitis, epilepsy, and thousands of other diseases cause ongoing symptoms and are treatable but not curable. Chronic illness is the leading cause of death and disability in this country, with seven out of every ten deaths attributed to chronic diseases. Eighty-one percent of hospital admissions are a result of chronic illness, as are 76 percent of all physician visits. These statistics come with a hefty price tag, too; 75 percent of a staggering $2 trillion in health care costs in 2005 came from chronic diseases.

  As the years passed, there was no doubt that Melissa McLaughlin dwelled in the kingdom of the sick. Her conditions weren’t going away, and they caused ongoing quality-of-life problems and disability. Gradually, some of her diagnoses got more specific: the combination of CFIDS and fibromyalgia explained the fatigue and the pain. Postural orthostatic tachycardia syndrome (POTS), a dysregulation of the autonomic nervous system that interferes with heart rate and other functions, explained the fainting and cardiac issues. Neurally mediated hypotension (NMH), an inability to regulate blood pressure often found in patients with CFIDS, and hypo-gammaglobulinemia, which increases the risk of infection, were also added to the list.

  However, if she thought that since she now had many labels and acronyms attached to her symptoms the skepticism of others she encountered toward her pain or her treatment options would improve significantly, she was mistaken.

  “I had a friend once who said that my illnesses were the hippest thing about me. I’m no trendsetter, but I had CFIDS before it was cool, according to him,” she says, aware of the antipathy that still surrounds the diagnosis of CFIDS. “Some doctors still sniff at the CFIDS/FM diagnoses, call them trash-barrel diagnoses. I say, that’s fine, but unless you know what it really is, then you’re not really helping anything, are you?” she asks.

  And therein lies one of the most compelling tensions history reveals: the quest to understand the nature of illness from a biological perspective versus the quest to understand illness from a personal perspective.

  For Emerson Miller, a forty-eight-year-old who is HIV-positive, his experience of illness has been no less challenging than Melissa McLaughlin’s. Where chronic pain conditions and autoimmune disorders often prove difficult to isolate, the test for HIV/AIDS is all too definitive. Fifteen years ago, after Miller had suffered from a flu-like illness that left him seriously ill, doctors tested him and found an incredibly high viral load. It was the mid-1990s, and doctors were flush with excitement over the newly approved triple drug cocktail used to treat HIV/AIDS, though no one knew the long-term effects of the drugs and back then, incorrect dosing was still a significant problem. At the time of his diagnosis, this barely registered.

  “I was so ill that I didn’t care, I didn’t care if I had three weeks to live,” he says. It was a very different dynamic than the immediate experience of those patients who may feel okay but choose to get tested because of known risk factors or disclosure of illness from present or past partners. Miller recognizes this distinction acutely; in his job as a patient coordinator and advocate at AIDS Action Committee of Massachusetts in Boston, he witnesses firsthand the process of diagnosis, acceptance, and ongoing treatment of this next generation of HIV patients. The population is far more diverse now than it was in the early days of the “gay plague”—IV drug users, young heterosexual patients, and an increasing number of African-American and Hispanic females are just some of the groups who join homosexuals as sub-populations with very different needs—but some things remain the same. Despite many permutations, the stigma associated with HIV/AIDS and more specifically with the means of transmission that has characterized the HIV/AIDS epidemic since its beginning is still a predominant theme in living with the disease. It isn’t simply a matter of prevailing societal norms of the healthy versus the sick that many of us experience. Miller describes an intricate hierarchy of blame or perhaps judgment, too: gay people are better than drug users, while hemophiliacs and those whose illnesses can’t be attributed to lifestyle are innocent.

  I often see a related form of hierarchy when it comes to suffering: patients who are quick to claim that their pain and “battle scars” are worse than those of other patients are an unfortunate reality in waiting rooms, support groups, and Internet forums. Both scenarios create internal divisions that weaken one of the greatest assets patients have in a healthy world: the solidarity of the illness experience.

  “There is still a lot of shame about homosexuality. Even at my age … there is still a lot o
f shame,” Miller says. “In my opinion, everybody is still a patient.”

  The dismissal, skepticism, and controversy surrounding Melissa McLaughlin’s diagnosis and the social stigma and internal hierarchy of illness in Emerson Miller’s story are evidence of even greater shifts in the trajectory of modern chronic disease. On the one hand, McLaughlin’s chronic pain experience rings true to the experiences of millions of patients, particularly women, living with conditions as disparate as migraine/chronic daily headache, irritable bowel syndrome, reflex sympathetic dystrophy (RSD) (also called complex regional pain syndrome, or CRPS) and many other conditions still tinged with the shadow of psychosomatic illness. In her memoir of chronic daily headache and Western attitudes toward pain and gender, Paula Kamen contemplates her “greater privilege to complain,” and reflects on her grandparents, who, like most everyone else at the time, were too caught up in survival to focus on maladies such as headaches.5 For that generation, infectious disease was a greater threat to mortality, and we will see the consequences of that loss of urgency and immediacy in later chapters.

  One of the shifts has been in the doctor-patient relationship, which has certainly gone through drastic changes from the “doctor as God” complex of earlier times. Throughout much of the twentieth century it was still common practice for doctors of cancer patients to tell their families their diagnosis, rather than giving the patient the information. We expect more collaboration from our physicians now, and we bring more information to the encounter ourselves. If we have the wherewithal and resources to do so, many of us will shop around and find a better fit rather than settling for a negative relationship with our health care providers.

  In his essay “How To Speak Postmodern: Medicine, Illness, and Cultural Change,” David B. Morris writes that a distinguishing characteristic of postmodern illness (“postmodern” here refers roughly to the period following World War Two) is that the narrative surrounding illness now often involves the patient.6 A postmodern view is one that must move beyond the biomedical model of illness that dominated much of the early and mid-twentieth century, a model based on the idea that the body and its ailments can be described in the language of physics and chemistry. That is, disease is something we cure using all the tools at our disposal.7 This model serves acute illness and injury well, but it falls short for patients who live with ongoing disease.

  Given the success in immunization, antibiotic development, and understanding of microbial diseases that characterized the decades following World War Two, this biomedical view of medicine is not surprising. However, with today’s technological innovation and the social interaction made possible by Web 2.0, whereby patients are willing to not only swap stories but also experiment with alternative treatment therapies, Morris offers up what he calls a biocultural model as a better fit. Here, illness exists at the “crossroads” of biology and culture, a confusing landscape where all parties involved are increasingly aware of the limits of the rigid biomedical model.8 This idea of a crossroads is an ever-shifting point at which cultural expectations and assumptions about illness meet scientific inquiry and innovation.

  McLaughlin’s and Miller’s stories are glimpses of this biocultural crossroads. In the former, we see the reservations ascribed to symptoms and conditions that cannot be verified with a blood test or a lab report. In the latter, we see a disease that is easily identified through testing, whose origins we can trace and whose biology is explored in research laboratories and hospitals around the world. Their diagnostic processes are opposites, yet their stories are bound by shared themes and, ultimately, shared experiences.

  In tackling these issues, I face challenges of scope and context. Before we can look at the emergence and ongoing adjustments in how we perceive chronic disease, we need to establish a basic historical understanding of disease itself. How have scholars, scientists, and physicians thought of the body? What does it mean to be sick? To have a meaningful conversation about the present, we need some context of our past.

  Ancient Thinkers with Modern Reach

  The Hippocratic oath to “do no harm” takes on added complexity when we factor in the extraordinary means and life-prolonging machines available to us now, but Hippocrates (ca. 460–ca. 377 B.C.) was responsible for more than the pledge so many of us recognize today. He was the first healer in antiquity to move away from the notion that illness and disease were caused by supernatural powers, cosmic forces that could destroy populations at will and who required sacrifices, prayers, and cajoling to spare people. Instead, Hippocrates relied on the power of observation and redefined the role of healer as a true clinician, one who paid close attention to patients’ symptoms in order to understand the nature of their diseases. In removing health and illness from the gods and insisting on natural causes and natural cures, Hippocrates caused a profound shift in agency to take place.9 No longer were patients solely at the mercy of mercurial gods, and no longer were their healers merely present to patch wounds or amputate limbs. This rational, observational medicine centered on the patient, not the disease, and Hippocrates and his followers were interested less in the specifics of singular diseases and more in understanding the natural course of an illness.10

  The distinction between illness and disease is one that comes up repeatedly in the broader history of chronic illness, with disease being the objective, evidence-based experience of being sick and illness being the subjective, lived experience of patients. In Hippocrates’ time, disease was believed to result when an imbalance of the body’s natural forces, or humors, occurred. Blood came from the heart and was warm and wet; bile came from the spleen and was black, cold, and dry; phlegm came from the brain and was wet and cold; and lastly, yellow bile, which came from the liver, was warm and dry.11 While centuries of discovery and understanding would eventually disprove the notion of the four humors, fundamental aspects of Hippocratic medicine still resonate today: diseases manifest differently from individual to individual, and a patient’s lifestyle and environment play large roles in determining the course of a disease.12 The Hippocratics’ view was actually quite simple: health represented equilibrium, while illness represented an upset to that harmony.13

  Influenced by the work of Hippocrates, Plato (ca. 428–ca. 348 B.C.) also believed that a disruption in the body’s natural forces—earth, fire, water, and air—caused disease, and that the physician’s duty was to advance health by harmonizing body and soul.14 The mind-body connection and the phrase “sound mind, sound body” that we see and hear often these days, particularly in the growing popularity of complementary and alternative treatments and relaxation techniques, is evident in the Platonic ideal of medicine. As Plato transmitted to us in The Republic, Socrates (ca. 470–399 B.C.) viewed health in similar terms, maintaining that virtue, beauty, and spiritual health are mutually dependent, unlike disease, ugliness, and weakness.15 Like Hippocrates, Plato involved the patient in his treatment of disease—not relying on divine intervention—and also invoked the patient’s at least partial responsibility for disease. Platonic healing depended on “the elimination of all evil from body and soul by means of a change in the way of living,” whereby the success or failure of treatment also rests with the patient.16

  Since more of his writing survived than did that of the ancient Greeks, Roman physician Galen (A.D. 129–ca. 199) remains the most prolific ancient writer on medical subjects. He employed the Hippocratic theory to try to understand the nature of disease, and his work with animal cadavers—coupled with his fame and self-promotion—led to misunderstandings of human anatomy that would circulate for a thousand years.17 Like others of his time, he believed blood was produced in the liver, and his penchant for extreme bloodletting, sometimes until the point of lost consciousness, was derived from the mistaken belief that since women bled monthly and appeared to suffer fewer illnesses than men, bloodletting was an effective way to rid the body of disease. The pulse was another favored topic of inquiry for Galen, but lacking the correct physiological understanding
of human anatomy and the circulatory system, his books and writings promoted ideas that would not be disproved until the nineteenth century.18 The power of his fame and accessibility perpetuated incorrect information about disease, similar to today’s landscape in which technology and social media make it possible to widely disperse information and research that may lack accurate or substantive evidence.

  While ancient times were characterized by the desire to understand the nature of disease and tie it to physiological imbalances as well as lifestyle, the Middle Ages, influenced by the spread of Christianity, reflected a spiritual understanding of disease and plague as wrought by sin. This is a marked shift from the more naturalistic and rational practice of classical medicine. Early Christian thought emphasized the split between the body and the soul (not the body and the mind), a divine purpose and plan for everything, and the implicit subordination of medicine to religion. Physicians were not healers in the same sense; they tended to the body, while priests were concerned with the more important matters of the soul.19

  Illness and suffering were viewed as punishment or a test of one’s faith, but the early Church also manifested a mission of healing.20 Since the body was created in the image of God and ultimately belonged to Him, He had the power to heal. The resurrection of Jesus Christ and the glory that waited for the faithful at the Final Judgment were the greatest examples of God’s power. The Gospel of Saint Luke, himself a physician, points to several miracles in which the healing power of Christ and his disciples triumphs over bodily disease, including restoring sight to the blind and raising the dead back to life. As Europeans struggled to survive and assimilate the great plagues of the first three centuries of the Christian Era, the notion that “illness is a consequence of sin and not a physical malady to be studied and analyzed as the Greeks did” was rooted in Biblical scripture.21