Elizabeth B. Pearce and Amy Huskey

“It is health that is real wealth and not pieces of gold and silver.”

—Mahatma Gandhi

Health is the “state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity,” as defined by the World Health Organization (2005) in its Constitution. The organization goes on to state that families and communities are able to thrive when individuals are able to maintain health. Our employment, finances, mental and emotional functioning, and spiritual lives all interact with our overall health.

The United Nations Universal Declaration of Human Rights Article 25 identifies health as a human right:

1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age, or other lack of livelihood in circumstances beyond his control.

2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection (United Nations, 1948).

While the status of health is very real, it is also important to examine the aspects of health and illness that are socially constructed. As members of society, we share assumptions about reality that define both health and illness. Illness has a biological component, yet it also embodies an independent element that is experienced by the person and observed by those outside of the illness. Societies construct the idea of “health” differently from place to place, and over time. For example, many societies consider health and health care to be a human right that all human beings are entitled to, but this is not universally true (Figure 7.1). What is your viewpoint?

The social construction of the idea of family, as discussed in Chapter 1, plays a special role in the health of families in the United States. In all other industrialized countries, health care is considered a human right, and all individuals can access comparable care regardless of family status. But in the United States, health care insurance is accessed through a variety of systems, all of which have age, income, employment status, and family relationships as criteria. How do definitions of “family” impact the access of any individual to health care?

Figure 7.1. Activists around the world continue to strive for universal access to health care.

Social Stigma and Family Health

Society informs the definitions for when an illness can be considered a disability, how eligibility for insurance and medical coverage are determined, what illnesses are perceived as legitimate, when the reality of an illness is questioned, and what illnesses are stigmatized (Griffiths & Keirns, 2015). These social constructs can, in themselves, contribute to differentiation in individual health as well as stereotypes, prejudice, and discrimination. Stigma, the social process whereby individuals that are taken to be different in some way are rejected by the greater society in which they live based on that difference, operates in the world of health, ability, and illness. Sociologist Erving Goffman said, “Stigma is a process by which the reaction of others spoils normal identity.” A disease or illness that is stigmatized is one in which there is some societal disapproval or questioning of the integrity of people who have the disease, which can also include medical professionals and the person with the disease stigmatizing themselves (Figure 7.2).

Mental health is a state of mind characterized by emotional well-being, behavioral adjustment, relative freedom from anxiety and disabling symptoms, and a capacity to establish relationships and cope with the ordinary demands and stresses of life.

It deserves a specific mention when it comes to stigma, as society has long considered it to be something that individuals can fix, rather than needing medical attention. Someone struggling with depression that causes weight gain or weight loss due to a lack of appetite or excessive hunger is an example of the relationship between mental health and stigma. Obesity and emaciation are both stigmatized in our culture, while the underlying health condition may be ignored. Mental illness is a wide range of mental health disorders that affect your mood, thinking, and behavior. Although we have seen a shift in media about mental illness from known celebrities coming forward, such as Demi Lovato, Chrissy Teigan, Steve Young, and Dan Reynolds, there is still a social stigma against mental illness. When a family member is diagnosed with a physical illness such as cancer or heart disease, we see communities and families coming together. Unfortunately, we rarely see mental illness struggles come to the surface without holding a place of shame or guilt; individuals, families, and communities are often more reluctant to talk and come together in the same way. Figure 7.3 expresses the concern that mental health is often hidden, or pushed aside.

Figure 7.3. There continues to be a need to advocate for mental health awareness.

When we speak about stigma, we speak of two different types: the social stigma, meaning the prejudiced attitudes others have around mental illness and self-perceived stigma, which is an internalized stigma that the individual who suffers from the mental illness has. Not only may the stigma around mental illness create painful emotions and a sense of invalidation for the individual, it can also result in a reluctance to seek treatment, social rejection, avoidance, isolation, and direct harm to psychological well-being. Stigma is reinforced by common cultural misconceptions, social stereotypes, popular media representations, the politicization of health care, and even some medical professionals and health care institutions.

There are many socially stigmatized diseases including HIV/AIDS and other sexually transmitted diseases, substance use disorders, skin conditions, and diseases that are less understood by the medical community, such as autoimmune disorders and chronic fatigue syndrome. Individuals may be less likely to seek treatment when experiencing symptoms of a stigmatized condition. In the United States, health insurance, paid for by the consumer or another entity, covers a portion of the risk of a person incurring medical expenses is the norm, rather than universal health care. Insurance creates another layer of bureaucracy, and less understood illnesses and treatments may not be covered by some insurance companies.

Even if a person with a stigmatized disease accesses health care, they may have fewer social supports and greater chances of isolation and discrimination in the health care setting and beyond. Management of a disability because of the deterioration of health due to a stigmatized illness can prove to be a tremendous hardship (Sartorius, 2007). It is important to consider how marginalized groups experience health inequities, including those experienced due to the stigma and prejudices linked with the societal perception of specific illnesses.

Structural Power and Family Health

One’s status in society, or structural power, can complicate the experience of social stigma related to medical conditions. For example, cisgender men hold more power in the United States than women or people outside the gender binary. What role does that play in the diagnosis of real health concerns and the social construction of those concerns?

We know that overwhelmingly men are the subjects of the majority of medical studies and research. That affects what is thought of as “typical” or “normal.” Women have more often been told that their symptoms are “all in your head” or related to “female troubles.” While this is less common than in the past, it likely continues to play a part in the misdiagnosis of serious illness in women and people with nonbinary gender identities. We also know that women experience diseases such as chronic fatigue syndrome and fibromyalgia in much higher numbers than do men. The medical community describes these syndromes in overly broad terms that make diagnosis difficult. We must ask ourselves: How do these multiple complex factors serve to continue to reinforce the existing power dynamic in the United States? What systemic changes in health care would reduce this inequity?

In this chapter, we will examine the overall health of families in the United States, with attention to comparisons among families’ experiences with health, illness, injury, and diseases as well as comparisons with other countries. We will describe the daily life factors and resources that affect health, including the effects of stigma, prejudice, and discrimination. We will look closely at how families access health care services, including the health care insurance system. We will discuss the question of health care as a human right.

Every time an individual is considered part of a marginalized group, including illness status, it intensifies the effects of discrimination and resulting health disparities, which are preventable differences in the burden of disease that are experienced by those groups. Considering disparities and social stigma provide a way of thinking about the social construction of illness. Someone from the LGBTQ+ community, for instance, already faces challenges in finding health care providers who are culturally competent and have knowledge in LGBTQ+ health (U.S. Dept. of Health and Human Services, n.d.). If they are also dealing with a stigmatized illness, then they have multiple obstacles that stand in the way of them receiving quality health care.

One could also examine how socioeconomic status (SES) may further complicate this scenario by realizing that people living in poverty are more likely to have no health insurance, therefore restricting access even more (U.S. Census Bureau, 2019). Even geographical location, like living in a rural area, or in the Southern portion of the United States, will reduce accessibility to health care (Warshaw, 2017).

Institutionalized inequities have been amplified during the coronavirus pandemic as illustrated in Figure 7.5. Some of the factors that contribute to greater numbers of Black, Indigenous, and Latinx families being affected by the COVID-10 virus include the following (Centers for Disease Control and Prevention, 2020):

• Crowded work environments such as meat-packing facilities
• Food deserts
• Less health insurance
• Less access to health care and virus testing as measured by geography and transportation options
• Greater likelihood to experience discrimination, stress, and lack of sleep

Figure 7.5. Watch the first 5.5 minutes of the video Aletha Maybank, MD, MPH, Discusses COVID-19 and Health Equity [YouTube Video]. This video from the American Medical Association features an interview with Doctor Aletha Maybank and explains how funding, data collection, and the overlap with structural discrimination affect the rates of the virus.

In Chapter 4 we illustrated the ecological systems theory. When families are viewed as a system, it is easy to imagine how health challenges of one family member impact the whole family. Imagine that a parent of young children is sick and can’t care for their children. In addition, what if they lack health insurance, or have to take two buses to get to their doctor’s office? Not only is the parent unable to care for their children, but they must also weigh whether to try to see a doctor, how to provide childcare, and how to pay for the visit. As you read this chapter, consider how each of the health challenges described may affect a family system, as well as the surrounding societal functions.

Licenses and Attributions for The Social Construction of Health

Open Content, Original

“The Social Construction of Health” by Elizabeth B. Pearce and Amy Huskey. License: CC BY 4.0.

“In Focus: The Overlapping Demands of Work, Family, and COVID-19 Testing” by Elizabeth B. Pearce. License: CC BY 4.0.

Open Content, Shared Previously

Figure 7.1. “Chalking the Universal Declaration of Human Rights 2015″ by University of Essex. Licensed under CC BY-NC 2.0.

“In Focus: Families, Health and Stigma” adapted by Elizabeth B. Pearce. License: CC BY 4.0.

“In Focus: Lung Cancer and Stigma” adapted by Elizabeth B. Pearce from “Health and Medicine” in Introduction to Sociology 2e.

Figure 7.2. “Lung Cancer Awareness” by Steve Thompson/Air Force Medicine. Public domain.

Figure 7.3. “Right on” by LizSpikol. License: CC BY-NC-ND 2.0.

Figure 7.4. “Stigma – Social and Self | Individuals and Society | MCAT” by Khan Academy and AAMC. License: CC BY-NC-SA 3.0.

All Rights Reserved Content

Figure 7.5. “COVID-19 Update for April 21, 2020” © American Medical Association. License: Standard YouTube License.

References

American Cancer Society. (2020, January 8). Lung cancer statistics: How common is lung cancer. https://www.cancer.org/cancer/lung-cancer/about/key-statistics.htm

American Lung Association. (2014, April). Addressing the stigma of lung cancer. https://www.lung.org/lung-health-diseases/lung-disease-lookup/lung-cancer/living-with-lung-cancer/how-to-talk-about-your-cancer/addressing-lung-cancer-stigma

Griffiths, H. & Kerins N. (2015, April 24). Introduction to Sociology 2e. OpenStax. https://openstax.org/books/introduction-sociology-2e/pages/19-1-the-social-construction-of-health

Kamath, S. D., Kircher, S. M., & Benson, A. B. (2019). Comparison of cancer burden and nonprofit organization funding reveals disparities in funding across cancer types. Journal of the National Comprehensive Cancer Network, 17(7), 849–854. https://doi.org/10.6004/jnccn.2018.7280

Sartorius, N. (2007). Stigmatized illnesses and health care. Croatian Medical Journal, 48(3), 396–397.

U.S. Department of Health and Human Services (2020) Lesbian, gay, bisexual, and transgender health. https://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health#31

U.S. Census Bureau. (2019, May 23). Who are the uninsured? https://www.census.gov/library/stories/2018/09/who-are-the-uninsured.html

Warshaw, R. (2017, October 31). Health Disparities Affect Millions in Rural U.S. Communities. https://www.aamc.org/news-insights/health-disparities-affect-millions-rural-us-communities

World Health Organization. (2005, September 15). Constitution. https://www.who.int/about/who-we-are/constitution