nsthilai – Contemporary Concerns in Medicine

Society’s Meaning of Sickness and its Toll on the Sick

The Cost of Illness

Illness comes with overwhelming amounts of pain, symptoms, trauma, and costs. These emotions consist of negative feelings such as guilt, frustration, apathy, hopelessness, anxiety, loneliness, denial, grief, and disempowerment. Healthcare and treatment costs are at an all time high, leaving behind concerning levels of debt and a lack of affordability for those who need help most. Symptoms and effects of illnesses are not always properly understood; therefore, it is not always known how to treat them. The list of the struggles for the sick person goes on and on. All of these factors shape individuals’ experiences and therefore shape their livelihoods. However, there are other factors that end up placing an additional burden on the sick. Each sick individual’s immediate communities as well as their social environments work hand in hand to affect their personal interpretation of their illnesses through defining them with stigmas, utilizing the ideology of health, and pushing for the creation of controlling health practices.

First, I will elaborate on how our healthcare system and the society we live in create and place powerful stigmas on the sick, utilize the ideology of health to form systems of beliefs, and misuse their power to control society. Then, I will detail the numerous mental and emotional effects these factors leave on the sick. I will conclude by discussing possible solutions to these issues, specifically focusing on how physicians can better their care of those who are ill.

The Social Meaning of Sickness

Every sick individual has their own unique personal human experience of their symptoms and their suffering. However, both their immediate community as well as their social one adds an additional burden and an additional dimension of suffering they are forced to deal with through stigmas, ideologies, and methods of control.

“Acting like a sponge, illness soaks up personal and social significance from the world of the sick person.”
Kleinman Arthur, Illness Narratives, 2017.

The Power of Stigmas

Stigma is defined by Goffman as discredited attributes that are clearly visible and identifiable, marking patients with disgrace and shame, spoiling their identity, and creating an internalized feeling of being inferior and less than (Goffman 2022). They become defined as straying away from the “normal” status quo as their health is altered in some way, leading to them becoming “disqualified from full social acceptance” (Goffman 2022). My younger cousin is incredibly intelligent, most likely the smartest person I know at the young age of 14. He excels in school, rapidly spits out definitions of complex vocabulary terms, easily explains difficult concepts, and is incredibly quirky with his random comments and daily quotes. His personality and knowledge astounds me everyday. However, he is looked at differently because of his disability. He was diagnosed with autism at a very early age. This has led to him getting degraded and picked on by peers, labeled and placed in a box by educational professionals, and defined by healthcare workers. They all base their understanding of who he is on his differences. “The stigmatized person is defined as an alien other…whose persona…the group regards as opposite to ones it values. In this sense the stigma helps to define the social identity of the group” (Goffman 2022). My cousin is a prime example of an individual who is labeled as “other” by people in society and people in positions of power.

Ideologies and Their Effects

Ideology is philosophical. It is symbolic and it is practical. It is a system of beliefs shared by a certain group in an effort to shape action, succeeding by covering up patterns of dominance, power, and inequality (Crawford 2006). Ideology becomes acceptable to us. Crawford argues that health itself is an ideology that is powerful and effective as a form of social control as it succeeds in pushing us to participate in certain behaviors and consume certain goods (Crawford 2006). It works to replace the concern for a mutual obligation with a sense of tackling sickness with an individual responsibility for health. In the film “How to Survive a Plague” on the AIDS epidemic, those suffering with AIDS were held to the personal responsibility of fighting for themselves, doing their own research, finding their own drugs and treatment, and using their own voices to protest and stand up against lawmakers and pharmaceutical companies (France 2012). It was clear that those in power were not prioritizing the issue, owning up to their responsibilities of protecting the health of citizens, or assisting those who were suffering incredibly.

AIDS activists protesting for proper treatment, medication, and other rights for victims

Establishment of Control Using Health

In addition to stigmas placed on people and the ideology of health affecting quality of care, the sick person battles differing forms of social and moral control. Medicine and health have become a form of authority that is not often questioned. There is a control over technology and jurisdiction over what is considered to be a good life. There is this idea that there is a rational and objective way to maintain healthy lifestyles and deal with certain illnesses in a way that is deemed “right.” When there is any attempt to step away and do anything in a different way, they are looked down upon and defined as resisting the correct way to heal. This takes an additional step towards labeling people. We become defined as being sick, dysfunctional, or needing medical intervention, leading to healthism where there is no upper limit of health, wellness, and fitness. There is always more you can do to remain healthy or heal. Sick people are pressured to answer two main questions of “why me” and “what can be done.” Without the answer to these questions, they may feel that they have failed, not dealt with their illness in the “correct” way, and deserve to be ill or that it is in some way their fault.

All in all, health practices act as a way to control, hack, and exploit the sick without having to force or coerce them as the effectiveness of social control removes the need for central or government power. A prime example of this is the overwhelming presence of wellness programs from gyms in work offices to the promotion of cycling classes and pilates. These work to create a more productive workforce, reduce liability through providing resources for healthy lifestyles, and attract more employees with the appearance of benefits (Winant 2018). Winant highlights Ehrenreich’s observance of the “fixation on controlling the body encouraged by cynical and self-interested professionals in the name of wellness” and how self care has become “a coercive and exploitative obligation [with] endless medical tests, drugs, wellness practices, and exercise fads that threaten to become the point of life” (Winant 2018).

Moving Forward: Recommendations for Clinicians

So how do we move forward from here? What steps can we take to better treat and care for the sick in a way that respects their dignity and right to fair care and treatment? We must ask ourselves how we can provide the utmost compassion and most effective care and treatment. It starts with those in power and those who interact most closely with the sick. This means physicians must take the first step. In this way, we can work to tackle the many issues that exist and thrive in our societies, hospitals, schools, and even homes.

Kleiman has offered some incredible advice for how we can take steps to achieve this through affirmation, listening, and offering empathy and compassion. He stresses that clinicians should work to affirm both the patients and their family members’ experience with a certain illness as constituted by lay explanatory models (Kleinman 2017). He also highlights the need for empathetic witnessing, which is listening (with care and intention) to what he calls the sick person’s persona myth or the story that they tell in an attempt to make sense of their illness (Kleinman 2017. We must also listen to their and their families fears and the trials and tribulations they face while mirroring these stories back to the patients in order to assist these patients in constructing these narratives (Kleinman 2017. I love these pieces of advice because in my opinion, one of the most important aspects of caring for an individual and bettering their health is forming proper relationships with them, relationships with total and complete care, fair equal dynamics, and dignity for the sick. Compassion and the feeling of being heard and understood is so important as those that are sick often face the experience of not having their voices heard, being constantly invalidated for their pain and emotions, and having their personal experiences be overlooked.

References

Crawford, Robert. “Health as a Meaningful Social Practice.” Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, vol. 10, no. 4, 2006, pp. 401–420., https://doi.org/10.1177/1363459306067310.
France, David, director. 2012. How to Survive a Plague. Sundance Selects. 109 min.
GOFFMAN, ERVING. Stigma: Notes on the Management of Spoiled Identity. PENGUIN BOOKS, 2022.
Kleinman, Arthur. “The Illness Narratives.” Academic Medicine, vol. 92, no. 10, 2017, p. 1406., https://doi.org/10.1097/acm.0000000000001864.
Winant, Gabriel. “A Radical Critique of Wellness Culture.” The New Republic, 23 May 2018, https://newrepublic.com/article/148296/barbara-ehrenreich-radical-crtique-wellness-culture.

The Stealing of Our Humanity: A Loss of Dignity

With its overwhelming resources, technological advancements, and so called exceptional medical training, the United States is expected to have the ability and intention to provide quality and fair treatment for all. However, we are failing to do just that. Despite the talk of the American Dream, all of America’s riches, and the idea of equality for all, numerous flaws are intertwined into the foundation of America, primarily seen in the quality of care for Americans. Not only are individuals, primarily those who identify as lower class or people of color, struggling to find proper access and affordability to care but humans are simply viewed as machines and statistics by the healthcare system. They are not seen for their individuality as a human and their dignity has failed to be recognized and acted upon. Therefore, they are not at all treated equally, respectfully, empathetically, or fairly. This is an issue that must be acted on with urgency so that the very system that is meant to protect and care for us most can do just that.

A Humanitarian Crisis

Once a person is not seen for their innate dignity, any treatment becomes acceptable. It is easy to mistreat someone when they are not seen for the person they are and the individuality that makes them who they are. This is what allows for the many issues in the U.S. healthcare system such as the financial burden on the poor, access problems for those in rural areas, over medicalization of female bodies, and racism against people of color.

A primary example to note is the emphasis on symptoms rather than holistic care of patients through factors such as a heavy reliance on electronic healthcare records. There is a greater focus on fragmented care than on holistic and integrated care, leading to handoff of patients between different providers in the system increasing the likelihood of error. There is a tendency for individuals to get tossed around to different settings that may not even have a connection to one another leading to duplicated care, uncoordinated services and increased expenses.¹ There is also often danger in prescribing medications that interact poorly with others or a repetition of tests already performed. Physicians and the health care system are also more focused on profits rather than the health outcomes of patients. Although the U.S. spends more on healthcare than any other nation in the world, there are poorer outcomes for many significant health measures such as “life expectancy, preventable hospital admissions, suicide, and maternal mortality.”¹ This type of treatment should not be considered proper or quality care for individual humans who experience pain, have unique health conditions specific to them, face their own surrounding circumstances and are overall not simply numbers or objects.

“The most powerful empirical stimulus for this is the realization of how much everyone has or believes he has something organically wrong with him, or more positively put, how much can be done to make one feel, look or function better.”
Irving Kenneth Zola in Medicine as an Institution of Social Control²

This is similar to how people are seen only for their sickness rather than who they are. Although a person is not condemned for having a disease, they are still seen as flawed if they don’t deal with the disease the “right way” by breaking appointments, not following treatment regimens, and delaying their seek of medical care.² This sick role imagines sickness through a lens of deviance and social obligation. Judgment and use of labels puts an additional burden on those that are sick when they are already feeling shameful, overwhelmed, and mistrusting due to their illness. Not only is this extremely problematic but medicine has become a force of authority and social control that remains unquestioned so this is a continuous pattern. It has been used as a way to secularize moral authority just as religion and law were once used to dictate what was wrong with a person and define them with their illness.² Due to their diseases, individuals become forbidden from certain activities, confined until cured, and subject to assumption and discrimination, leaving them with no choice but to feel defined by their sickness and punished for their illness.² We are simply looked at for our sickness and begin to be solely defined by being labeled as dysfunctional and in need of medical intervention rather than our identities. This interferes with every individual’s own human experience, giving medical professionals and institutions sole access into the area of people’s human existences and the unique circumstances that come with it.

Slipping away

There is very often an immediate instinct and reliance on determining a medical reason for issues and medicating resulting in unnecessary diagnoses, prescribing of drugs, and performances of tests due to the over medicalization out of fear of getting sued.¹ This is seen through medical care often being immediately offered to pinpoint a specific issue and prevent the risk of blame. It is almost as if patients are seen as guinea pigs that are experimented on and medicated rather than humans with dignity and individuality who deserve to be talked to, treated fairly, and most importantly respected and understood.

This theme is shown in the Remote Area Medical (RAM) film surrounding a nonprofit that helped to alleviate and serve a community with a pop up clinic providing free medical services.³ Although the organization has been successful at stepping up for a group that struggled receiving access and opportunity to just and quality healthcare due to the area they resided in, there was still an issue in the way they provided care. I felt as though the people receiving RAM’s help were dehumanized in a way. They were seen as numbers rather than individual persons. Although it was a very hectic situation where everyone attempted to keep everything in order and keep the lines moving, the workers and volunteers shouted out numbers hastily. It was clear that the people attending were anxious to get in and get help but rather than the workers empathizing with their extenuating situations and circumstances, they shouted at them and were not understanding. This is a prime example of the issue of assembly line care where significant issues and hardships are overlooked, patient stories are not heard, trust and personal relationships are not able to be developed, and patients feel the need to give up and avoid the care they need.¹

As a young black woman from a single parent household, my family and I faced a lack of access to proper healthcare continuously–care that was affordable and given without judgment or assumptions. We were looked at as statistics that they rushed caring for just to carry on and get to the next person. It was often that physicians and other medical authorities urged that they always knew what was best and because of our physical appearance or financial status, we were seen as not educated enough to make informed decisions for ourselves. My mom constantly had to stand up for herself and for us whenever she had any questions or needed clarification about certain vaccines, procedures, or tests she was uncertain about. Overall, our dignity as human beings was overlooked.

Reclaiming our Individuality

So how do we reclaim our human individuality in the intense world of healthcare and medicine?

“The question going forward is whether there will be trust, will, and vision necessary to build something better.”
Rob H. Shmerling from Harvard Health¹

America’s healthcare system has the ability to soften effects of hardships such as economic inequality through delivery of high quality care to everyone but the institutions as well as the expensive financing patterns of the system are built against achieving this.⁴ Access to medical services is unequal in this nation, lower income families experience the most financial burdens, and disparities flood the system. Individuals struggle to gain a grasp on quality care and a quality of life as they are labeled as less than and are seen as a number when they are uninsured, uneducated, rural residents, female, or a person of color.

Despite this country’s healthcare system and its countless issues, there is hope. There is no simple solution but I believe the greatest change will come through 1% solutions, which are tiny tweaks done to the healthcare system until there is a significant difference in patient outcomes.⁵ Although we can’t fully anticipate or shape the future by preventing all problems, as patterns in healthcare outcomes become more susceptible to empiricism, this ambition is what will allow for incrementalist solutions promising benefits down the road, which is something that we will have to be patient about and trust in as we “recognize problems before they happen” and use “steady, iterative effort [to] reduce, delay, or eliminate them.”⁵

Doctor holding hand of patient to give comfort, express health care sympathy, and build medical trust and support, encouraging and reassuring the patient.

All in all, we need advocates, people who care and have the power to stick up for us with the utilization of their voices and platforms. These are the people that can make the most change and the greatest difference in our lives. They are the people that see us for who we are. Step by step and day by day we can truly become what America is known for, a nation that cares about the health of all of its people, one that strives towards equal access and opportunity for all.

References

¹ Robert H. Shmerling, MD. “Is Our Healthcare System Broken?” Harvard Health, 13 July 2021, https://www.health.harvard.edu/blog/is-our-healthcare-system-broken-202107132542.

² Zola, Irving Kenneth. “Medicine as an Institution of Social Control.” The Sociological Review, vol. 20, no. 4, 1972, pp. 487–504., https://doi.org/10.1111/j.1467-954x.1972.tb00220.x.

³ Reichart, Jeff and Farihah Zaman, directors. Remote Area Medical. Candescent Films, 2013.

⁴ Dickman, Samuel L, et al. “Inequality and the Health-Care System in the USA.” The Lancet, vol. 389, no. 10077, 2017, pp. 1431–1441., https://doi.org/10.1016/s0140-6736(17)30398-7.

⁵ Gawande, Atul. “The Heroism of Incremental Care.” The New Yorker, 16 Jan. 2017, https://www.newyorker.com/magazine/2017/01/23/the-heroism-of-incremental-care.