What's a Disease? Social Science Perspectives on Health and Illness
How do social scientists understand health and illness?
Diseases are complex things.
At first glance, they might seem pretty easy to understand. After all, we've all been sick at one time or another, and on the basis of our experiences, it seems obvious where the boundary between "health" and "illness" lies. Moreover, as history shows, the bodily symptoms of illness (including things like fevers, sores, fainting, bleeding, vomiting, and the more general experience of pain) have been pretty much a universal constant in the life of the human species. Given all of this, it makes a certain amount of sense to see diseases as purely natural phenomena—as things that exist independently of us, as things out there in the world (or in our bodies) just waiting to be discovered.
But are diseases self-evident? Where's the dividing line between something we'd consider "normal" and something we'd consider "pathological"? Is this pre-determined by biology—by bacteria, viruses, genes, and other things existing in nature? Or is there more to it than that?
Since the 1970s, an expansive body of social sciences literature has shown that diseases are much more than biological "givens." While most diseases have a biological basis of some kind or another, when we get right down to it, often, the things that inform our understandings and experiences of illness have more to do with culture than nature. In other words, on a fundamental level, diseases are ideas—ideas informed by our values, norms, attitudes, customs, expectations, and other sociocultural phenomena.
That's not to say that diseases exist purely in our minds. Far from it! It's to say that our illness experiences can't be reduced to the various forms of pain and dis-ease that germs, toxins, or other illness-causing things give rise to. It's to say that much of the suffering we deal with when we're sick has an unnatural cause—one tied to our beliefs, our ideas about morality, and the way we think about particular situations or groups of people. It's to say that instead of being timeless and universal, diseases are time- and place-bound things that reflect the cultural preoccupations of the societies in which they emerge.
The Social Construction of Health and Illness
Another way of saying this is that diseases are social constructs. As medical sociologists have long argued, what gets defined as a "disease" is socially negotiated and shaped by cultural and social systems (Conrad & Barker, 2010). Some illnesses, moreover, are embedded with cultural meaning not directly derived from the nature of the condition. For example, Emily Martin (2007) shows how episodes of mania and depression in bipolar disorder take on distinct gendered meanings. For many years in American popular culture, mania has been characterized and valued as an inherently strong, masculine attribute, while depression has been systematically devalued as a weakness inherent to the emotional, feminine world.
As Martin's examples show, the meanings of illness can expand far beyond the biomedical "facts" about a condition. Diseases can be built out of conditions or circumstances that are viewed as being culturally "undesirable" or "unacceptable," and as researchers have shown, it is in fact fairly common for differences connected with race, gender, sex, class, or nationality to be pathologized in ways that conflate diseases with specific groups of people. Anxieties and fears of "the other" have long served as basis for constructing ideas about health and illness. So too do disease concepts frequently serve to shore up the social status quo, to reinforce existing systems of political and economic domination, and legitimize prevailing moral codes.
Disease concepts are capable of reinforcing social norms precisely because they do not appear at random moments in history, but instead emerge from existing structures of knowledge and practice. These structures, or "ecological niches" as Ian Hacking (1998) refers to them, are made up of previously existing taxonomies of disease, normative moral coding schemes, and accepted evidence paradigms. Taken together, these elements help us understand both how and why something is able to be socially constructed as a particular kind of illness. Without a pre-existing set of knowledge and practices (like psychiatry, for example) within which a condition can find a home, it is unlikely to become understood and treated as a "disease." But when all these elements are in place, they provide a framework within which a set of behaviors or "symptoms" becomes legible as a (bio)medical phenomenon—a disease.
An Example: Sexually-Transmitted Infections
Sexually-transmitted infections (STIs) offer some of the best evidence for the theory of social constructionism. For a long, long time, diseases like syphilis, gonorrhea, and (more recently) AIDS have been viewed as punishments for sexual immorality—as what many doctors used to call "the wages of sin." Even today, the belief that people who contract an STI are "guilty" of some kind of sexual misconduct persists, and historically, this belief has fostered a form of public health more dedicated to controlling sexuality than stopping the spread of disease.
Examples of this abound. In the late 1400s, when syphilis first appeared in Europe, the town of Aberdeen, Scotland declared that all "loose women" practicing the "sins of venery" would be branded and banished. In the mid-1800s, England passed a series of laws known as the Contagious Diseases Acts, which gave police officers the power to detain any woman believed to be a "common prostitute." If a medical inspection showed evidence of a sexually-transmitted disease, the woman could be arrested and placed in a Lock Hospital for up to a year. During World War Two, the US Congress passed the May Act, which attempted to reduce the spread of syphilis and gonorrhea among soldiers and sailors by criminalizing sex-work near military camps. Believing that women constituted a threat to the US war effort, between 1941 and 1945, the US also created a network of "rapid treatment centers," which were used to forcibly detain, test, and treat any "suspicious" woman believed to be of "loose morals."
Spread out across five centuries, the above examples illustrate one of the key cultural forces that has informed the construction of STIs: misogyny. Within Western societies, women have generally been regarded as "reservoirs of infection" when it comes to STIs. Typically, only men have been portrayed as victimsof these diseases, while both medical authorities and lay commentators have historically cast women as their source.
Why is this? As numerous scholars have pointed out, this pathologization of female bodies reflects a deeply ingrained belief in Western societies: that women should be sexually pure—committed to monogamy and marriage, and having childbirth and motherhood as their only goals. Informed by assumptions of female sexual chastity, this gender stereotype excuses men's non-reproductive sexual behavior while demonizing women's. In conflating the control of disease with the control of sexuality, it also fosters ineffective public health, allowing men to spread STIs in an uncontrolled, unchecked manner. Indeed, the sexual double standard has made stigmatized groups such as sex-workers more vulnerable to disease. And historically, public health responses to STIs have served as a vehicle for expressing misogyny, racial prejudice, homophobia, and all manner of bigotries.
Putting Constructionism to Practice
The theory of social constructionism cues us into the various cultural factors that give shape to our disease concepts. But that's just the beginning.
What makes social constructionism truly useful is the way it forces us to grapple with the social dimensions of disease. The theory helps us see that beyond simply creating more effective diagnosis tests or therapies, medicine and public health should also be about addressing the broader factors that influence our illness experiences. It shows us that often, the underlying problem that we face when we're dealing with disease isn't biological at all: it's social, and is bound up in larger structural matters like economic inequality, racism, and sexism.
To take just one example: people with stigmatized illnesses like STIs often feel unable to seek out professional medical help because of the mistreatment and discrimination this might result in. For these individuals, the key obstacle to wellbeing isn't the absence of effective cures. It's the ridicule, victim-blaming, and ostracism they risk simply by informing others of their illness. No amount of medicine can fix this problem, which means that in order to be effective, responses to disease need to focus on things like stigma (which we've written about separately here) and the systems of inequality that make marginalized groups vulnerable to infection. Indeed, what constructionism helps us see is that often, medical solutions are just the beginning of successful public health interventions.
Our understanding of what's a disease and what isn't often determines the way we allocate resources, time, and money. Social constructionism can help us evaluate those choices, and rethink them when necessary. When put into practice, this theory opens a pathway to more compassionate care, more comprehensive public health work, and to health and wellbeing for all. By understanding more about the interactions of biology and culture, we can help create a healthier world.
About this Article
Interested in learning more about the history of sexually-transmitted diseases? Check out Elliott's book In Search of Sexual Health: Diagnosing and Treating Syphilis in Hot Springs, Arkansas, 1890-1940.
Also, stay on the look-out for Melina's forthcoming book, which examines the social construction of pain in the U.S. during the opioid overdose crisis. How We Hurt: The Politics of Pain in the Opioid Epidemic will be released in September 2023 from Oxford University Press.
Photo by Towfiqu barbhuiya on Unsplash