The Cultural Meaning of Illness

Many medical sociologists contend that illnesses have both a biological and an experiential component, and that these components exist independently of and external to each other. Our culture, not our biology, dictates which illnesses are stigmatized and which are not, which are considered disabilities and which are not, and which are deemed contestable (meaning some medical professionals may find the existence of this ailment questionable) as opposed to definitive (illnesses that are unquestionably recognized in the medical profession) in the medical field (Conrad and Barker, 2010).

For instance, sociologist Erving Goffman (1963) described how social stigmas hinder individuals from fully integrating into society. In essence, Goffman (1963) suggests we might view illness as a stigma that can push others to view the ill individual in an undesirable manner. The stigmatization of illness often has the greatest effect on the patient and the kind of care they receive. Many contend that our society and even our healthcare institutions discriminate against certain diseases—like mental disorders, AIDS, venereal diseases, and skin disorders (Sartorius, 2007). Facilities for these diseases may be sub-par relative to facilities aimed at addressing and alleviating other conditions; they may be segregated from other healthcare areas or relegated to a poorer environment. The stigma attached to a specific condition may keep people from seeking help for such conditions, consequently being detrimental to the individual’s and society’s well-being.

Contested illnesses are those that are questioned or questionable by a fraction of medical professionals. Disorders like fibromyalgia or chronic fatigue syndrome may be either true, objective, and tangible illnesses or, as argued by some medical professionals, may exist only in patients’ heads. This dynamic can affect how a patient seeks treatment and what kind of treatment they receive.

The Sick Role

Sick role is a term used in medical sociology regarding sickness and the rights and obligations of the affected. It is a concept created by the American sociologist Talcott Parsons in 1951. Parsons argued that the best way to understand illness sociologically is to view it as a form of deviance that disturbs the social functioning of society. The general idea is that the individual who has fallen ill is not only physically sick, but now adheres to the specifically patterned social role of being sick. “Being Sick” is not simply a “condition”; it contains within itself customary rights and obligations based on the social norms that surround it, and therefore plays a role in everyday, normative interactions.

Parsons’ theory outlined two rights of a sick person along with two obligations. The sick person’s rights are: being exempt from normal social roles, and not being responsible for their condition. Conversely, the sick person’s obligations include trying to get well and cooperating with medical professionals.

The Social Construction of the Illness Experience

The idea of the social construction of the illness experience is based on the concept of reality as a social construction. In other words, there is no objective reality; there are only individual perceptions of it, which are always relative and involve a process of construction. The social construction of the illness experience addresses the way some patients control the manner in which they reveal their diseases, and the lifestyle adaptations patients develop to cope with their illnesses.

Figure 1. The Mosby pain rating scale helps health care providers assess an individual’s level of pain. What might a symbolic interactionist observe about this method? (Photo courtesy of wrestlingentropy/flickr)

In terms of constructing the illness experience, culture and individual personality both play a significant role. For some people, a long-term illness can have the effect of making their world smaller, leading to a life that is more defined by the illness than by anything else. Their illness becomes their marker, or their focal status. For others, illness can be a chance for discovery, for re-imagining a new self (Conrad and Barker, 2007). Culture plays a substantial role in how an individual experiences illness. Widespread diseases like AIDS or breast cancer have specific cultural markers that have changed over the years and that govern how individuals—and society—view both the condition and the individual directly affected by the condition.

Today, many institutions of wellness acknowledge the degree to which individual perceptions shape the nature of health and illness. Regarding physical activity, for instance, the Centers for Disease Control (CDC) recommends that individuals use a standard level of exertion to assess their physical activity. This Rating of Perceived Exertion (RPE) gives a more complete view of an individual’s actual exertion level, since heart rate or pulse measurements may be affected by medication or other factors (Centers for Disease Control, 2011). Similarly, many medical professionals use a comparable, somewhat universal scale for perceived pain to help determine pain management strategies.

Watch this video to learn more about the sick role and ways that society influences health. Look for examples of how health, disease, and illness are socially constructed.

The Social Construction of Medical Knowledge

Conrad and Barker show how medical knowledge is socially constructed; that is, it can both reflect and reproduce inequalities in gender, class, race, and ethnicity. Conrad and Barker (2011) use the example of the social construction of women’s health and how medical knowledge has changed significantly in the course of a few generations. For instance, in the early nineteenth century, pregnant women were discouraged from driving or dancing for fear of harming the unborn child, much as they are discouraged, with more valid and evidence-based reason, from smoking or drinking alcohol today.

Has Breast Cancer Awareness Gone Too Far?

Figure 2. Pink ribbons are a ubiquitous reminder of breast cancer. But do pink ribbon chocolates do anything to eradicate the disease? (Photo courtesy of wishuponacupcake/Wikimedia Commons)

Every October, the world turns pink. Football and baseball players wear pink accessories. Skyscrapers and large public buildings are lit with pink lights at night. Shoppers can choose from a huge array of pink products. In 2014, people wanting to support the fight against breast cancer could purchase any of the following pink products: KitchenAid mixers, Master Lock padlocks and bike chains, Wilson tennis rackets, Fiat cars, and Smith & Wesson handguns. You read that correctly. The goal of all these pink products is to raise awareness and money for breast cancer. However, the relentless creep of pink has many people wondering if the pink marketing juggernaut has gone too far.

Pink has been associated with breast cancer since 1991, when the Susan G. Komen Foundation handed out pink ribbons at its 1991 Race for the Cure event. Since then, the pink ribbon has appeared on countless products, and then by extension, the color pink has come to represent support for a cure of the disease. No one can argue about the Susan G. Komen Foundation’s mission—to find a cure for breast cancer—or the fact that the group has raised millions of dollars for research and care. However, some people question if, or how much, all these products really help in the fight against breast cancer (Begos, 2011).

The advocacy group Breast Cancer Action (BCA) position themselves as watchdogs of other agencies fighting breast cancer. They accept no funding from entities, like those in the pharmaceutical industry, with potential profit connections to this health industry. They’ve developed a trademarked “Think Before You Pink” campaign to provoke consumer questioning of the end contributions made to breast cancer by companies hawking pink wares. They do not advise against “pink” purchases; they just want consumers to be informed about how much money is involved, where it comes from, and where it will go. For instance, what percentage of each purchase goes to breast cancer causes? BCA does not judge how much is enough, but it informs customers and then encourages them to consider whether they feel the amount is enough (Think Before You Pink, 2012).

BCA also suggests that consumers make sure that the product they are buying does not actually contribute to breast cancer, a phenomenon they call “pinkwashing.” This issue made national headlines in 2010, when the Susan G. Komen Foundation partnered with Kentucky Fried Chicken (KFC) on a promotion called “Buckets for the Cure.” For every bucket of grilled or regular fried chicken, KFC would donate fifty cents to the Komen Foundation, with the goal of reaching 8 million dollars: the largest single donation received by the foundation. However, some critics saw the partnership as an unholy alliance. Higher body fat and eating fatty foods has been linked to increased cancer risks, and detractors, including BCA, called the Komen Foundation out on this apparent contradiction. Komen’s response was that the program did a great deal to raise awareness in low-income communities, where Komen previously had little outreach (Hutchison, 2010), therefore justifying their seemingly contradictory goals.

What do you think? Are fundraising and awareness important enough to trump issues of health? What other examples of “pinkwashing” can you think of?

Functionalism

According to the functionalist perspective, health is vital to the stability of the society, and therefore sickness is a sanctioned form of deviance. Talcott Parsons (1951) was the first to discuss this in terms of the sick role: patterns of expectations that define appropriate behavior for the sick and for those who take care of them.

According to Parsons, the sick person has a specific role with both rights and responsibilities. To start with, they have not chosen to be sick and should not be treated as responsible for their condition. The sick person also has the right of being exempt from normal social roles; they are not required to fulfill the obligation of a well person and can avoid normal responsibilities without censure. However, this exemption is temporary and relative to the severity of the illness. The exemption also requires legitimization by a physician; that is, a physician must certify that the illness is genuine.

The responsibility of the sick person is twofold: to try to get well and to seek technically competent help from a physician. If the sick person stays ill longer than is appropriate (malingers), they may be stigmatized.

Parsons argues that since the sick are unable to fulfill their normal societal roles, their sickness weakens the society. Therefore, it is sometimes necessary for various forms of social control to bring the behavior of a sick person back in line with normal expectations. In this model, doctors serve as gatekeepers, deciding who is healthy and who is sick—a relationship in which the doctor has all the power. Moreover, medical providers function as dispensers of resources for the healing of the sick. But is it appropriate to allow doctors so broad discretion in deciding who is and is not sick? And what about people who are sick, but are unwilling to leave their positions for any number of reasons? (e.g., personal/social obligations, financial need, or lack of insurance)

Conflict Perspective

Theorists using the conflict perspective suggest that issues with the healthcare system, as with most other social problems, are rooted in capitalist society. According to conflict theorists, capitalism and the pursuit of profit lead to the commodification of health: the changing of something not generally thought of as an abstract object into something that can be bought and sold in a marketplace in order to create profit for someone somewhere. In this view, people with money and power—the dominant group—are the ones who make decisions about how the healthcare system will be run. They therefore control the degree to which the individuals and groups without political and economic power will remain subordinate. This creates strife within the larger healthcare system and also results in personal health disparities between the dominant and subordinate groups. The inequality that is seen in other spheres and institutions is pervasive in healthcare access, further accumulating disadvantage to already subordinate groups.

Alongside the health disparities created by class inequalities, there are a number of health inequalities created by racism, sexism, ageism, and LGBTQ+ discrimination. When health is a commodity, the poor are more likely to experience illness caused by inadequate diet, to live and work in unhealthy environments, and are less likely to challenge the system or its authority. In the United States, a disproportionate number of racial minorities also have less economic power, so they bear a great deal of the burden of poor health. It is not only the poor who suffer from the conflict between dominant and subordinate groups. For many years, and only until very recently, homosexual couples had been denied spousal benefits, either in the form of health insurance or in terms of medical responsibility. Further adding to the issue, doctors hold a disproportionate amount of power in the doctor/patient relationship, which provides them with extensive social and economic benefits.

Discrimination is often the result of stigma towards specific groups or medical conditions. This stigma is rooted in the perception of an undesirable condition or attribute. Take HIV/AIDS, for example. Because of their illness, individuals with HIV/AIDS have lost jobs, been denied educational opportunities, been kicked out of their homes, or have been mistreated (or not treated at all) by the healthcare system.^[1] Most importantly, because of the stigma attached to the disease, individuals have foregone medical assistance and have passed away as a consequence. Legal protections have been put in place, yet the stigma and discrimination remain prevalent. Until we de-stigmatize the condition itself, and despite the implementation of policy, individual acts of discrimination will likely continue. HIV continues to be an epidemic in parts of Africa, not necessarily because of stigma, but because of the lack of available treatment resources.

Watch the following two videos to see real-life examples of HIV stigmatization, even within the medical community.

While conflict theorists are right to point out certain inequalities in the healthcare system, and their critiques have propelled equity-driven policy, they do not give enough credit to medical advances that would not have been made without an economic structure to support and reward researchers, a structure that has typically been dependent on profitability. While this market solutions model has indeed provided many advances, a conflict theorist would likely respond that greater state-sponsored investment–with better public health outcomes as the goal—could also effect the same evolutions in treatment. Also at issue for conflict theorists and their critics is the degree to which the hard-won medical expertise possessed by doctors and not patients might render a truly mutual understanding elusive.

Symbolic Interactionism

According to theorists working in this perspective, health and illness are both socially constructed. As we discussed in the beginning of the module, interactionists focus on the specific meanings and causes people attribute to illness. The term medicalization of deviance refers to the process that changes “bad” behavior into “sick” behavior. A related process is demedicalization, in which “sick” behavior is normalized again. Medicalization and demedicalization affect who responds to the patient, how people respond to the patient, and how people view the personal responsibility of the patient (Conrad and Schneider, 1992). Under this perspective, as our perception of a condition changes, so do the social consequences of that condition.

Figure 3. In this engraving from the nineteenth century, “King Alcohol” is shown with a skeleton on a barrel of alcohol. The words “poverty,” “misery,” “crime,” and “death” hang in the air behind him. (Photo courtesy of the Library of Congress/Wikimedia Commons)

An example of medicalization is illustrated by the history of how our society views alcohol and alcoholism. During the nineteenth century, those who drank too much were considered bad, lazy people. They were called drunks, and it was not uncommon for them to be arrested or run out of a town. Drunks were not treated in a sympathetic way because, at that time, it was thought that it was their own fault that they could not stop drinking. During the latter half of the twentieth century, however, people who drank too much were increasingly defined as alcoholics: people with a disease or a genetic predisposition to addiction who were not responsible for their drinking. With alcoholism defined as a disease and not a personal choice, alcoholics came to be viewed with more compassion and understanding. Thus, “badness” was transformed into “sickness.”

There are numerous examples of demedicalization in history as well. During the Civil War era, slaves who frequently ran away from their owners were diagnosed with a mental disorder called drapetomania. This has since been reinterpreted, unsurprisingly, as a completely appropriate response to being enslaved. A more recent example is homosexuality, which was labeled a mental disorder or a sexual orientation disturbance by the American Psychological Association until 1973.

While interactionism does acknowledge the subjective nature of diagnosis, it is important to remember who most benefits when a behavior becomes defined as illness or condition. Pharmaceutical companies make billions treating illnesses such as fatigue, insomnia, and hyperactivity that may not actually be illnesses in need of treatment.

Watch this video to review and see examples of how each of these key paradigms views medicine.