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

by Laurie Edwards

  Barbara Kivowitz is all too aware of just how precious her socioeconomic status is in terms of her health and her management of chronic pain. She may not be truly wealthy, but as an employed white-collar professional, she has comprehensive health insurance that covers tests considered experimental. She has been able to shop around and consult with specialists at top-tier hospitals in different cities. What’s more, her socioeconomic status grants her access to a certain social network, both professionally and personally, and those connections can prove useful when bumping up against a seemingly impermeable health care system.

  But what if you don’t have such good insurance? What if you can’t afford the insurance you do have, or if you lost it and no longer qualify? If you’re healthy, maybe you will get lucky and remain that way until your situation changes. But if you have chronic disease and do not have adequate health care, prevention is a luxury that is no longer yours. It’s about survival—physically, financially, and emotionally. The greatest economic fear I have is losing my health insurance, and I live in Massachusetts, where a type of universal health insurance already exists. A loss to me is not as black-and-white as having no insurance at all; it could mean less comprehensive health care, and even that nuance could mean several thousand dollars more in bills each year. I am grateful for the excellent health insurance that I work incredibly hard to provide for my family, and even with that, there are always letters to write, explanations to offer, and battles to wage to convince the people in charge of approving claims that preventive care is truly medically necessary. I have an incredible pulmonary specialist, one of the few well versed in my rare lung disease, and access to the most updated diagnostic procedures. That little blue card I carry with me is the difference between life and death, between being productive and being incapacitated, between economic stability and financial catastrophe. My socioeconomic status, propelled largely by education, geography, and similar childhood opportunities, gives me access to the little blue card with the power to determine so much.

  As the gap between rich and poor continues to widen, so too does the gap in health and positive health outcomes. The Centers for Disease Control and Prevention defines these health disparities as differences in health outcomes and their determinants between different population segments—typically, along social, environmental, geographic, and demographic lines.25 Health disparities cover an enormous swath of variables and correlations, much more than what we can discuss here, but some snapshots of the type of disparities that exist should illustrate the breadth of the problem. Air pollution, which can exacerbate asthma, impacts the overall health of people living within its radius. While both rich and poor live and work in areas that have significant levels of air pollution and are affected by it, the fact that racial and ethnic minority groups are more likely than whites to live in urban areas means they continue to experience a larger impact from it. Although heart disease cuts across racial and socioeconomic lines, black men and women are much more likely to die from heart disease than whites; and coronary artery disease and stroke, the leading causes of death in our country, represent the biggest discrepancy in life expectancy among blacks and whites. What’s more, rates of preventable hospitalizations increase as income decreases, and black patients are hospitalized for preventable medical issues at more than twice the rate of white patients.26

  The phrase “poverty is a carcinogen” was coined in 1989 by then director of the National Cancer Institute, Dr. Samuel Broder. More than twenty years later, poverty ranks right up there with smoking and obesity as a cancer-causing agent. In reflecting on the National Cancer Institute’s 2011 Facts and Figures report, Dr. J. Leonard Lichtenfeld highlights some of the more startling statistics, starting with the fact that 37 percent of cancer deaths in people between the ages of twenty-seven and sixty-four are associated with poverty. Those living in poverty who also lacked education fared even worse. For example, deaths from lung cancer occur four to five times more often in the least educated patients than they do in the most educated ones. In fact, Dr. Lichtenfeld writes, “Education trumps ethnicity.”27 Individuals with less education tend to have lower incomes. Those with lower incomes face more obstacles to care, including routine preventive health services, and those who lack health insurance are diagnosed with cancer at later stages and therefore face more grim prognoses.28

  As just a handful of examples illustrate, factors like lack of education, health insurance, and health literacy coupled with numerous environmental contributions and genetics make prevention of disease a loaded topic. There is still another snag in the individual-responsibility-for-behavior thread, though. If we truly are moving away from the biomedical model of disease and are willing to accept that illness, like wellness, does not exist in a vacuum, then we must look at the ramifications of such intense focus on individual choices. Can this emphasis on changing lifestyle and behavior stray into blaming patients for illness and stigmatizing them? Is it just another manifestation of the same pattern repeated throughout history?

  Potentially, yes.

  “The only downside of making people more aware of individual responsibility is the risk of stigmatizing the overweight and obese. Ironically that stigma is becoming less and less of a risk as the majority of Americans are overweight or obese! The NHLBI [National Heart, Lung, and Blood Institute] recognizes that a five- to ten-percent total body weight loss is sufficient for substantial medical benefits. The idea is not for Americans to hold up anorexic supermodels as our wellness ideal—but rather [to become] strong, fit people at any size (within reason),” says Dr. Val Jones. She raises an interesting point about the lessening of the stigma against the obese. At the other end of the spectrum is the “fat acceptance” movement, which has gained momentum in the twenty-first century thanks to blogs and social media. Advocates for fat acceptance decry the discrimination and stigmatization of people based on their weight and the assignation that weight reflects negative aspects of a person’s character.

  The prevalence of weight discrimination has increased by 66 percent over the last decade and is now comparable to rates of racial discrimination, especially for women. Widespread beliefs that overweight and obese people are lazy, weak, lack self-discipline, and are less competent mean inequities exist in the workplace, in educational institutions, and in health care facilities.29 Particularly troubling are attitudes among health care professionals; in one study of primary care physicians, more than 50 percent of them considered their obese patients to be unattractive and noncompliant, while one third described them as sloppy and weak-willed. Physicians revealed that they considered their patients’ weight problems to be primarily a behavioral issue, brought on by overeating and inadequate exercise.30 Individuals pick up on these attitudes, whether in health care settings or workplace environments, and out of a possible twenty sources of stigma, patients in one study ranked physicians as the second most common source. Emotional distance between patient and physician is a recurrent theme in the social history of chronic illness, and in this case, it is not too difficult to imagine that the obese patient who picks up on his or her physician’s judgment or disdain may not be too forthcoming. As soon as conversations about health (physical and psychosocial) break down, the likelihood of a positive health outcome does, too.

  It seems to be human nature to want to scapegoat people who have AIDS or lung cancer and other highly stigmatized diseases as being at fault for engaging in risky behavior. We tend to be uncomfortable with the knowledge that some people who get lung cancer never smoked, for example, because that means it isn’t something that only happens to other people—other people making choices we wouldn’t. Intellectually, of course, we know we aren’t immune from illness. As many patients with chronic illness have pointed out in this book, we don’t like to acknowledge some health problems that won’t go away, that stretch beyond the limits of even the most advanced medical resources and can’t be cured.

  When I was a college student at Georgetown University, the humid
, swampy weather of Washington, D.C., made my daily struggle to breathe even more challenging. Sometimes it felt like I was inhaling sludge, and no matter what I did, I couldn’t get more than shallow breaths. I was hospitalized much more frequently during my three years in D.C. than I was the year I studied abroad in Dublin, Ireland, where the weather was more consistent (even if rainy) and the air was much less humid. The physical environment impacts my symptoms in a very real way. However, as researchers and patients interested in parsing out the causes of disease can attest, the term “environment” has a much broader meaning than what we typically associate with the word. When it comes to matters of health and wellness, it includes where we dwell (urban, suburban, exurban, or rural setting), what degree and type of air pollution we’re exposed to, what types of plastics we use to store and cook food, what sweeteners we put in our coffee, and more.

  Asthma is a revealing disease to explore in this context. Twenty million Americans—one out of every five—have asthma, and it is the most common chronic disease in childhood; nearly five million asthma patients are under the age of eighteen.31 It is expensive, both in terms of emergency room visits and hospitalizations and in terms of lost wages and productivity. Forty thousand Americans stay out of work or school each day due to asthma symptoms, and every day, five thousand patients visit emergency rooms because of it and one thousand people are admitted to hospitals.32 Asthma has a strong genetic component, but its symptoms and severity are greatly influenced by environment. Dust, mold, smog, chemicals, fragrances, exhaust, and other environmental triggers can cause or exacerbate asthma attacks; a 2010 study in the Journal of Allergy and Clinical Immunology found that air pollution was linked to suppressed immune function that worsened the severity of asthma attacks in children.33

  There is some compelling research that suggests that for many with chronic illnesses, particularly autoimmune diseases, the chemicals that are such an omnipresent part of our world play a role, too. In The Autoimmune Epidemic, Donna Jackson Nakazawa takes readers on an intense journey to uncover how what we breathe, what we consume, and what we absorb can make our immune systems go haywire. To augment her point, Nakazawa highlights statistics like these: In 2005, the Centers for Disease Control and Prevention found a staggering 287 pollutants and industrial chemicals in the fetal cord blood from ten newborns around the country.34 A 2007 study examining the association between exposure to chemicals in the workplace and developing certain systemic autoimmune disease found that farmers who worked with crops and were exposed to pesticides were more likely to die from autoimmune disease,35 and a 2006 study using hospital data found that patients with rheumatoid arthritis or lupus who breathe in air polluted with heavy particles for a year or longer face a 22 percent increase in the risk of dying from their disease.36 Though merely a sampling of the exhaustive research she supplies, these facts are persuasive evidence that the chemicals that have become ubiquitous in our environment also become part of our physiology. If the way we live is implicated in heart disease or type 2 diabetes, it is no less implicated in the misfirings and disruptions of the immune system that can result in autoimmune diseases.

  “The ever-increasing severity and number of illnesses probably doesn’t speak too well for our society. If we didn’t feel such pressure to ignore symptoms or lead such high-stress lives, maybe more cases of serious illness would be nipped in the bud; maybe less would develop in the first place. If we put more focus on leading balanced lives—if we valued rest, relaxation, nutrition, and exercise in the same way that we seem to value stress—we would undoubtedly be a healthier society as a whole,” observes Jennifer Crystal, whose neurological Lyme disease has forced her to build more balance into her personal life.

  Not surprisingly, stress and autoimmune diseases are linked as well. While even healthy people can attest to the toll stressful life events can take on physical health, when it comes to chronic illness and in particular autoimmune disease, the relationship between stress and disease is notable. Stress alone is not what causes illness, an association many patients chafe under in their doctors’ offices, but rather that stress often worsens the symptoms and the progression of a disease. Stress did not cause the genetic mutation that means the cilia I need in my lungs do not work, nor does it cause the mucus that chokes me, or the infections I pick up so easily from those around me. However, when I am unusually stressed, worried, or overworked and I don’t sleep well and I push myself beyond my limits, my infections last longer, my oxygen saturation isn’t as good, and my energy is strained. For patients with multiple sclerosis and rheumatoid arthritis, stress is linked with an increased risk of flares and the onset and worsening of symptoms, respectively.37

  Does this mean we can simply chalk some diseases up to a polluted world, or to systemic stress overload? No. To do so would be to overlook the genetic predisposition, randomness, and confluence of all of these factors that have been responsible for these diseases throughout the ages. However, given the drastic changes in lifestyle, manufacturing, and behavior in the past sixty years or so, we cannot look at increased rates of illness without this data in mind.

  The other component in the chronic illness equation is, of course, genetics. As a patient with a genetic lung disease, I am all too familiar with the vagaries of inherited illness. No one else in my family has PCD, although my uncle and I share a diagnosis of celiac disease, which does have a genetic component to it. Some patients have a genetic predisposition toward a disease (such as type 2 diabetes or heart disease) that tips them over into the disease category, even if their lifestyle and environmental factors themselves might not have. But close to 20 percent of people living with chronic disease have diseases that are not attributed to lifestyle. For them, the genetic component of illness, not prevention and not environment, is of utmost importance. More than that, this genetic component is a source of stigma itself. I’ve had strangers, health care professionals, and even family members question whether I should have a child because of my genetic background. In the blogosphere, I know of patients with type 1 diabetes and patients with other diseases that have a genetic component—even if their case isn’t directly inherited—who have been told similar things: we don’t have the right to pass on our “faulty” genes. Such comments leave me indignant, but they do not surprise me, not anymore. I could craft lengthy rebuttals about ignorance, or spout facts about inheritability versus the many conditions we acquire through our lifetimes, or point to the achievements people with illness have met. Parenting, working, writing, participating in my community, and managing those very conditions that bring judgment so I can do each of these things are a better use of my time.

  When the human genome was fully mapped in 2003, its potential to unravel the mysteries of so many diseases was exhilarating. Now, personalized medicine uses genetic information to develop more targeted drugs. You can send your saliva off in a specially designed kit to get a DNA analysis done of your risk for acquiring diseases. With this information you can seek out others just like you, you can research conditions more fully to assess your risk, and in the case of lethal diseases like Huntington’s, you can find out whether or not you possess the gene that will someday manifest this brutal disease. Understanding why diseases happen is a critical step in targeting better treatment for them, perhaps even in allowing for curative measures someday.

  It is in matters of DNA research that informed consent is again a controversial topic. Science writer Amy Harmon, who authored a Pulitzer Prize–winning series on the impact of genetic technology for the New York Times, reports that today’s scientists struggle with how to apply the concept of informed consent to genetic research. Federal courts have ruled that once cells leave the body, we don’t have property rights to them, but courts do uphold our right to know how those cells will be used. Cases in which study participants find out their DNA is being used for purposes beyond what they were told raise important questions for the future. Can we ensure DNA remains anonymous? What is the best way to get
voluntary consent? What happens if scientists use DNA to study diseases or conditions the individuals don’t want to know more about?38 Science moves us one step closer to eliminating the stigma of illness by giving us more information, but technology opens up new opportunities for our health to be a source of discrimination.

  Similarly, stem cell research also has the potential to yield huge leaps in understanding and treating chronic and debilitating diseases. It is highly politicized in nature; President Barack Obama overturned George W. Bush’s federal funding ban within months of taking office in 2009, to the exultation of many scientists and patients, and the issue quickly became entrenched in red state–blue state politics. Stem cells are undifferentiated, which means that under the right conditions, they can grow into specific types of cells—heart, lung, tissue, etc.—and can replace unhealthy, dying cells. When applied to diseases like cancer, heart disease, and diabetes, as well as to patients with spinal cord injuries and other conditions, such regeneration could radically alter treatments and outcomes.39 Since many stem cells are harvested from embryos used in in-vitro fertilization, stem cell research is a hotly contested issue. In previous decades, we had Karen Ann Quinlan and the right to die, and Terry Schiavo and the right to life; and for some, stem cell research is wrapped up in the same conversation about abortion, right to life, and the government’s role in shaping science policy. In what some researchers fear as a sign of the return to Bush’s “Dark Ages,” in 2011, nearly all Republican presidential candidates said they were in favor of limiting President Obama’s broadened funding of embryonic stem cell research.40 For patients and families waiting for a breakthrough, the issue is as intensely personal as it is political for others.

  Barbara Kivowitz believes the degree to which we view illness as a value itself reflects directly back to our broader cultural priorities. If illness and death are seen as natural processes of living, then we look at patients differently than if illness is seen primarily as a weakness or failing. Stigma and blame have been ascribed to individuals for centuries, whether we’re looking at the slum-dweller who became the prevailing image of the tuberculosis patient in the nineteenth century, the upper-middle-class female patient with fibromyalgia who stands as a symbol of psychosomatic anxiety, or the patient with HIV or Hepatitis C whose infections are the consequences of risky behavior. In the twenty-first century, as emphasis on lifestyle’s role in illness increases, the scope of patients who live with diseases are increasingly held responsible for managing their illness through behavior choices. The physical, emotional, and economic toll of chronic disease means prevention will be a constant theme. Yet as we’ve seen, the factors that go into the prevention and progression of many diseases—health disparities, socioeconomic status, access to health care, environment, and genetics, to name some—make it much more complicated than snap judgments would have it seem. I am especially drawn to the perspective that as humans, we tend to live in the shorthand. The long view is much more difficult, but it is what is required of us if we are to move away from these deeply entrenched views on illness, character, and suffering.