Contemporary Concerns in Medicine – Page 2 – A blog for students in Contemporary Concerns in Medicine to share their ideas and musings on health, medicine, and society

The Burden of Providing Unpaid Care in the U.S.

Personal Family Experience Caring for a Loved One

A few years ago, my grandmother was diagnosed with primary progressive aphasia, which is a rare neurological syndrome that affects the ability to communicate. The first symptom my grandmother experienced was losing the ability to speak, so she communicated by writing down her thoughts. Over time, she lost the ability to write as well. Eventually, it became apparent that my grandmother could not understand what other people were saying to her. During the final few years of her life, my grandmother could no longer perform daily tasks such as going to the bathroom or feeding herself.

During the early years of my grandmother’s disease, my grandfather took care of her. He assisted her as she tried to communicate with others and helped her navigate the world. When my grandmother’s condition started to worsen, my aunt stepped in to provide additional assistance and care. Ultimately, my grandfather and aunt decided it was best to put my grandmother in a nursing home to have professional nurses and caregivers help care for her.

Although my grandfather and aunt still spent a lot of time caring for my grandmother while she was in the nursing home, they did not have to spend all hours of the day watching over her and tending to her needs. However, many people in the U.S. are not able to put their loved ones in nursing homes or hire extra help, whether it may be due to financial or cultural reasons, and are forced to spend all their time and energy acting as unpaid caregivers.

Statistics of Unpaid Caregivers in the U.S.

About 20 percent of the U.S. adult population, or about 50 million U.S. adults, provides unpaid care to an adult over the age of 50. Over 75 percent of these unpaid caregivers are women. Most unpaid caregivers spend the same amount of time working as a caregiver that people spend working a full-time job. Additionally, many of these caregivers are employed or are raising their own children at the same time. It is estimated that caregivers provide about 470 billion dollars in free labor each year.

The vast majority of unpaid caregivers provide care to a relative. A few unpaid caregivers provide care to a non-relative, such as a friend or neighbor. Some of the tasks that unpaid caregivers perform include preparing meals, cleaning, assisting with dressing and bathing, and providing transportation to and from medical appointments. It is important to note that race and ethnicity play a large role in the makeup of unpaid caregivers in the U.S. African Americans provide the most hours of unpaid adult care per week, followed by Hispanics, then Asian Americans, and finally white Americans according to an AARP report.

Providing unpaid care takes a mental toll on the caregivers, and it causes a financial strain. Providing unpaid care for multiple hours a week results in impaired self-care and increased depression and psychological distress. Also, family caregivers spend over 7,000 dollars annually, equating to 26 percent of their income, on providing care to a senior loved one on average. In addition, about 22 percent of caregivers report using all their short-term savings, while 12 percent say that they went through all their long-term savings while providing care for elderly parents at home according to an AARP report.

The Effects of Covid-19 on Unpaid Caregivers

“The coronavirus pandemic has revealed many problems in our health system, and few more starkly than the way it both undervalues and relies on caregivers.”
Kate Washington, The New York Times

Covid-19 has placed an even greater strain on unpaid caregivers than before the pandemic. An example can be seen with Sabrina Nichelle Scott, a black woman who left her job in 2016 to become the primary caregiver for her grandmother Lillian, who had dementia. Scott had developed a good system of caring for her grandmother until the pandemic hit. Once Covid-19 came into play, Scott had to provide round-the-clock care in her grandmother’s Harlem apartment because the outside world became too risky. Lillian refused to wear a mask, which confined Scott and her grandmother to the small Harlem apartment. For the first few months of the pandemic, Scott did not get any breaks from caring for her grandmother. As a black woman, she felt even more pressure to be an intensive caregiver due to black culture and the resistance from other family members to the idea of getting more skilled care for Lillian. Lillian eventually died in March 2021, and although Scott is glad to have been able to help her grandmother, she reports being traumatized from the experience.

Scott is not the only unpaid caregiver whose mental health was affected from caring for a loved one during the pandemic. According to a survey conducted by the CDC, unpaid adult caregivers had higher rates of anxiety disorder and depressive disorder symptoms compared to all respondents, and unpaid adult caregivers had higher rates of seriously considering suicide. In addition to affecting many unpaid caregivers for older adults, the Covid-19 pandemic has resulted in a greater demand to provide care for children due to the closure of schools and daycares, and most of this responsibility has fallen on women. These women also reported higher rates of mental strain, such as depression.

Conclusion

The U.S. has millions of unpaid caregivers that suffer mental and financial burdens in silence, and people of color are disproportionately affected by the need to act as an unpaid caregiver. The U.S. government needs to act to support unpaid caregivers. Not many caregivers can pay for additional help or put their loved ones in a nursing home like my family was able to do for my grandmother who suffered from advanced primary progressive aphasia. In order to relieve some of the burden felt by unpaid caregivers who have to provide intensive care for their loved ones, the U.S. government needs to create programs and provide money to these caregivers.

Works Cited

Courage, Katherine Harmon. “America Isn’t Taking Care of Caregivers.” Vox, Vox, 4 Aug. 2021, https://www.vox.com/22442407/care-for-caregivers-mental-health-covid. Accessed 26 Mar. 2023.

Family Caregiver Alliance. “Caregiver Statistics: Demographics.” Family Caregiver Alliance, https://www.caregiver.org/resource/caregiver-statistics-demographics/. Accessed 26 Mar. 2023.

Mayo Clinic Staff. “Primary Progressive Aphasia.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 27 Dec. 2018, https://www.mayoclinic.org/diseases-conditions/primary-progressive-aphasia/symptoms-causes/syc-20350499. Accessed 26 Mar. 2023.

Ranji, Usha, et al. “Women, Work, and Family During COVID-19: Findings from the KFF Women’s Health Survey.” Kaiser Family Foundation, 22 Mar. 2021, https://www.kff.org/womens-health-policy/issue-brief/women-work-and-family-during-covid-19-findings-from-the-kff-womens-health-survey/. Accessed 26 Mar. 2023.

Samuels, Claire. “Caregiver Statistics: A Data Portrait of Family Caregiving.” APlaceforMom, 2 Dec. 2022, https://www.aplaceformom.com/caregiver-resources/articles/caregiver-statistics. Accessed 26 Mar. 2023.

Schoch, Deborah. “1 In 5 Americans Now Provide Unpaid Family Care.” AARP, 18 June 2020, https://www.aarp.org/caregiving/basics/info-2020/unpaid-family-caregivers-report.html. Accessed 26 Mar. 2023.
Washington, Kate. “50 Million Americans Are Unpaid Caregivers. We Need Help.” The New York Times, The New York Times, 22 Feb. 2021, https://www.nytimes.com/2021/02/22/opinion/us-caregivers-biden.html. Accessed 26 Mar. 2023.

Washington, Kate. “50 Million Americans Are Unpaid Caregivers. We Need Help.” The New York Times, The New York Times, 22 Feb. 2021, https://www.nytimes.com/2021/02/22/opinion/us-caregivers-biden.html. Accessed 26 Mar. 2023.

Family Caregivers and What They Tell Us About the American Healthcare System

According to Vox, nearly 48 million Americans provide some form of informal care to an adult with either physical or mental health needs. My mother happens to be one of these people. She takes care of her mother–my grandmother–who has Alzheimer’s, and who is also physically unable to take care of herself. Family caregivers, like my mother, play a critical role in providing care and support to individuals who are unable to take care of themselves due to age, illness, or physical or mental disability. A challenge that many family caregivers have faced since the Covid-19 pandemic is the inability to take off work to be able to care for their loved ones, which puts caregivers in an unfair situation–to either provide less care or lose their job. Because of the time and extensive care that many older patients require, the commitment for family caregivers is immense. Fortunately enough, my mother happens to be one of the lucky ones.

Source: National Alliance for Caregiving (NAC)

According to the KFF reading, many family caregiving responsibilities (both before and after the pandemic) largely fall on women. More than one in ten women report they were caring for a family member who needed special assistance prior to the pandemic, and over one in ten women also report that they have new caregiving responsibilities as a result of the pandemic. As I think about my parents, my mother happens to have an older mother than my dad’s mother (she’s 84), so it makes sense that she is the one that has caregiving responsibilities. Thankfully, my dad’s mother is only 63 and father only 67 (both in very good physical shape), so I don’t foresee my dad having to take on the role of caregiver anytime soon. However, the findings about gender differences in caregiving was striking to me nonetheless.

Source: Unsplash

Since 2020, my mother has worked from home and our family relocated cities from New York City to Milwaukee, WI. Now, my mother is a short drive from the facility that my grandmother currently lives in. She is able to see her everyday and is constantly checking in on her, bringing her meals, and taking her to doctor’s appointments. However, she is not paid or compensated for the time, money, and care that she pours into my grandmother. My mother would do what she does whether she was paid or not, however it does significantly affect her everyday life. This kind of constant care can take a significant toll on caregivers’ physical, emotional, and mental health. Specifically, as my grandmother’s Alzheimer’s has progressed, my mom has experienced increased feelings of sadness, anxiety, and hopelessness when she visits my grandmother.

Source: MDPI

These kinds of feelings are common among caregivers and exposes the flaws in the American healthcare system that do not provide family caregivers with the proper help, resources, or money that they need to not only take care of their loved ones, but to take care of themselves in the process too. The lack of proper healthcare services and resources in the United States places a significant burden on family caregivers, who may struggle to provide the care that their loved ones need while also maintaining their own physical and mental health and well-being. Addressing these issues will require a comprehensive approach that addresses the systemic economic, social, and cultural barriers to accessing proper healthcare services and resources.

Source: Atlas

A topic that we did not discuss too much in depth in class, but directly relates to the healthcare system, unpaid family caregivers, and the inequalities that are exacerbated, is long-term care insurance. Privatized long-term care insurance is something that my grandmother was afforded after being a public school teacher in Wisconsin for nearly fifty years. In the 1960s, my grandmother and other teachers like her were not paid well, however in return she was provided with great health insurance, life insurance, and dental insurance. Even though the insurance at the time was great, because healthcare costs for the elderly in the United States have skyrocketed tremendously, her insurance only covers about half of her facility bill, which is $7,000 a month for a single room. My grandmother has recently moved into a shared room with another woman, with the cost being $3,000 less, so the insurance covers the entirety of the bill now. However, the cost for the facility that my grandmother lives in is still too steep for most Americans to pay, leaving them no option but to place their elderly loved ones into nursing homes–instead of homes with more comprehensive, tailored care such as assisted living or memory care facilities.

Source: McKnights Senior Living

The American healthcare system does not prioritize or protect its elderly population. One of the main issues is the high cost of healthcare, which is often unaffordable for those aged 65 and older that are living off of fixed incomes. Many elderly patients also struggle to access quality care because of their inability to be mobile. There is a significant lack of attention on preventative care for seniors, which can lead to more serious health issues down the line, as well as frequent instances of medical errors and misdiagnoses that can have devastating consequences for elderly patients. Reforms are needed in the American healthcare system to protect our elderly population. This could include policies that expand access to affordable care for seniors, provide more comprehensive coverage for preventative care, and implement stronger safeguards to prevent medical errors. Protecting the elderly is so important because they are a vulnerable group at higher risks for health issue, financial insecurity, and social isolation. They have contributed to the inner workings of society for decades, and deserve to be treated care. Their health and well-being is crucial for the overall functioning of society.

Sources

Alzheimer’s Association. (2022). What is Alzheimer’s Disease? Retrieved March 27, 2023, from https://www.alz.org/alzheimers-dementia/what-is-alzheimers.

Atlas

Breijyeah, Z and Karaman, R. (2020). Comprehensive Review on Alzheimer’s Disease: Causes and Treatment. DMPI. Retrieved March 27, 2023, from https://www.mdpi.com/1420-3049/25/24/5789.

CAP. (2014). Reforms to Help Meet the Growing Demand for Long-Term Care Services. CAP. Retrieved March 27,2023, from https://www.americanprogress.org/article/reforms-to-help-meet-the-growing-demand-for-long-term-care-services/.

Courage, H. (2021, August 4). America isn’t taking care of caregivers. Vox. Retrieved March 27, 2023, from https://www.vox.com/22442407/care-for-caregivers-mental-health-covid.

Meadowmere and Mitchell Manor Oak Creek. (2023). Memory Care in Oak Creek, WI. Retrieved March 27, 2023, from https://www.fivestarseniorliving.com/communities/wi/oak-creek/meadowmere-mitchell-manor-oak-creek/memory-care.

NAC. (2020). Caregiving in the U.S. NAC. Retrieved March 27, 2023, from https://www.caregiving.org/research/caregiving-in-the-us/.

Ranji, U. et al. (2021). Women, Work, and Family During COVID-19: Findings from the KFF Women’s Health Survey. KFF. Retrieved March 27, 2023, from https://www.kff.org/womens-health-policy/issue-brief/women-work-and-family-during-covid-19-findings-from-the-kff-womens-health-survey/.

Rothschild, P. (2021). Supporting unpaid caregivers in crisis: A talk with Alexandra Drane. Mckinsey. Retrieved March 27, 2023, from https://www.mckinsey.com/industries/healthcare/our-insights/supporting-unpaid-caregivers-in-crisis-a-talk-with-alexandra-drane.

Unsplash

Medicalization of Childbirth: Where We Stand and How We Can Improve

When I ask my mom about my birth story, she immediately winces and says it was the “happiest day of her life.” I always thought it was because as a young mom, birth is a foreign and frightening experience, but as I get older, the more I realize that birth should actually be one of the best days of one’s life and not frightening at all.

Childbirth is one of the most miraculous and profound moments in a woman’s life. It can be a beautiful and challenging experience for the mother and her family, especially when considering its implications for physical and psychological well-being. But, what has transformed this unique event into a terrifying experience, where doctors, hospitals, and medical intervention predominate? This question has led to the development of the medicalization of childbirth, which entails using medical interventions in a process that was initially natural.

Medicalization of childbirth refers to the medical approach to the labor process, from prenatal care to delivery. This practice focuses on the use of medical interventions and techniques aimed at reducing the time of delivery while making it more efficient and safe. While medical interventions have become useful in preventing maternal and infant mortality in the developed world, there are concerns that this approach has led to overmedicalization, where unnecessary and invasive procedures are carried out, and women become passive in the decision-making process.

How did we get here?

Medical Interventions

Medicalization of childbirth is responsible for introducing various medical interventions that aim to make the process more efficient and safer. A significant number of women receive interventions such as induction, epidurals, and c-sections, even when they didn’t want or need them. While these techniques have been helpful in reducing maternal and infant mortality rates, their overuse has led to the introduction of unnecessary procedures that can cause harm to the mother and the child. For instance, cesarean sections, which involve surgical delivery, are associated with higher risks of bleeding, infection, and other complications.

32.1% of births in the United States are vis c-sections, while the c-section rate recommended by the World Health Organization (WHO) states that “rates higher than 10% are not associated with reductions in maternal and newborn mortality rates.”

Besides, high rates of cesarean sections have been associated with reduced successful vaginal birth after cesarean (VBAC) birth, which can lead to more medical interventions during childbirth.

There is a common misconception that once a mother undergoes a c-section, their following births will also be via c-section, however, 60%- 80% of women who had a c-section have had a successful subsequent vaginal birth.

Institutionalization

When I asked my mom if there was any reason why she chose the hospital she did, she said it was because this was the “safest” option. Childbirth has become a largely institutional affair, with hospitals and other medical facilities playing a dominant role.

“The achievement of well-being was rapidly becoming a private matter, won by individual effort, professional advice, and consumer products rather than participation in social life.”
“Health as a Meaningful Practice”

Given that they provide medical equipment and expertise, these facilities are seen as safer and more efficient than home births. While hospitalization has reduced mortality rates during childbirth, it has contributed to increased use of medical interventions, leading to more perineal and episiotomy surgeries, induction of labor, and interventions such as forceps, among others. These interventions can be unnecessary, and they may reduce the natural potential of the birthing process.

“It’s an accepted way of having a baby, but it’s not the way that your body is built to have a baby. So all of a sudden there are knives and there’s pulling and you feel like this shaking and it’s sort of a weird, surreal experience.”
“I felt like I was left on my own”: A mixed-methods analysis of maternal experiences of cesarean birth and mental distress in the United States

Loss of autonomy

Medicalization of childbirth has led to the loss of autonomy for women in determining their birth plans. Owing to institutionalization, childbirth has become more medicalized, which means women have limited options and are more likely to follow the recommended medical interventions. This is particularly true for first-time mothers who might not be informed about their birthing alternatives. Mothers should have the right to choose their birth plan, including the type of medical intervention to be used, or if they undergo a Caesarean section. They also should be informed about the potential risks and benefits of each choice. Even when mothers raise concerns about their own bodies, there is still suspicion as medical training practitioners have been trained to draw suspicion of patients’ narratives .

“They said, ‘You can either leave against AMA [Against Medical Advice],’ or whatever, ‘or you can get a c-section,’ and so that was really traumatic for me.”
“I felt like I was left on my own”: A mixed-methods analysis of maternal experiences of cesarean birth and mental distress in the United States

Where do we go from here?

Medical advancements have led to the development of methods that improve the safety and efficiency of childbirth. However, it is clear that overmedicalization has led to unnecessary procedures and interventions, which can increase complications and side effects. Medicalization of childbirth has contributed to the overuse of interventions, institutionalization of childbirth, and reduced autonomy for mothers. Rights such as choice of birth plan and not losing the wisdom and traditional methods of midwifery should be respected to maintain that natural balance that birth should be. Therefore, we should consider interventions and institutionalization as an aid, not the central approach to childbirth. We must consider medicine’s relationship with social control—where medicalization is one of the key strategies employed by medical institutions to control social norms, behavior, and the functioning of society. By finding a balance between the medicalized and non-medicalized approaches, we can ensure that childbirth remains an empowering experience for women. Babies are best brought in with love and support, and a medicalized process should not compromise their natural moment.

Works Cited

Crawford, R. (2006). Health as a meaningful social practice. Health:, 10(4), 401-420.
Kleinman, A. (2020). The Meaning of Symptoms and Disorders. In The Illness Narratives: Suffering, Healing, And The Human Condition (pp. 3-30). Basic Books.
FastStats – Births – Method of Delivery. (n.d.). CDC. Retrieved March 27, 2023, from https://www.cdc.gov/nchs/fastats/delivery.htm
Infographic: The Overmedicalization of Childbirth. (2018, September 12). California Health Care Foundation. Retrieved March 27, 2023, from https://www.chcf.org/publication/infographic-overmedicalization-childbirth/#related-links-and-downloads
Maternal Mortality in the United States: A Primer. (2020, December 16). Commonwealth Fund. Retrieved March 27, 2023, from https://www.commonwealthfund.org/publications/issue-brief-report/2020/dec/maternal-mortality-united-states-primer
Scott, J. R. (n.d.). Vaginal birth after cesarean delivery: a common-sense approach. PubMed. Retrieved March 27, 2023, from https://pubmed.ncbi.nlm.nih.gov/21775851/
Sega, A., Cozart, A., Cruz, A. O., & Reyes‐Foster, B. (2021). “I felt like I was left on my own”: A mixed‐methods analysis of maternal experiences of cesarean birth and mental distress in the United States. Birth, 48(3), 319-327.
Vaginal Birth After Cesarean (VBAC): Facts, Safety & Risks. (2021, August 23). Cleveland Clinic. Retrieved March 27, 2023, from https://my.clevelandclinic.org/health/articles/21687-vaginal-birth-after-cesarean-vbac
WHO Statement on Caesarean Section Rates. (n.d.). World Health Organization (WHO). Retrieved March 27, 2023, from https://apps.who.int/iris/bitstream/handle/10665/161442/WHO_RHR_15.02_eng.pdf
Zola, I. K. (1972). Medicine as an institution of social control. The sociological review, 20(4), 487-504.

HIV/AIDS: A Highly Stigmatized Illness With the Capacity to Define a Person

In a society where being healthy is a high standard that people strive to attain, it can be very detrimental to a person when they are diagnosed with an illness that has no cure. The society we live in today has always been very individualistic in the sense that people are expected to become healthy and return to doing what they have been doing before they became sick. There is an idea that people who become sick could have avoided it by changing their lifestyle and habits. In this society, having any illness would make one feel like a burden, feel guilty, or have a sense of uselessness. Sadly, we live in a society where people with these illnesses are not treated with respect. As someone with a great family friend that was diagnosed with HIV, it can be heartbreaking to see the many ways that this diagnosis interferes with their self-image and life. As someone who also has hopes of going to medical school and becoming a doctor, the way that shame and disease can impact people is something that I want to keep in mind to provide patients with the best care. I hope to talk about the background of HIV/AIDS, the negative experience of people with illnesses and diseases, the impact of stigma and shame, and disparities in this disease that causes people with it to be an easy target for discrimination along with ways that physicians can slightly improve the experience.

HIV/AIDS Background

HIV (human immunodeficiency virus) is a virus that attacks cells that help with fighting infections in the human body (“What Are..”). HIV can be contracted by having contact with bodily fluids such as sharing injection drug equipment along with unprotected sex. Leaving HIV untreated leads to AIDS which is acquired immunodeficiency syndrome (“What Are..”). Although there is no final cure for HIV, people can take antiretroviral medications that are used to treat it, helping people live longer lives (“HIV and..”). Although there are many ways to contract HIV/AIDS, with the most common being drug equipment and unprotected sex, casually interacting with people does not put you at risk which is what makes the discrimination people with HIV/AIDS face very disconcerting

Source: HIVinfo.NIH.gov. https://hivinfo.nih.gov/understanding-hiv/fact-sheets/basics-hiv-prevention

Experience of Illness: Stigma and Shame

My family friend with HIV/AIDS has mentioned to me many times that his friends would stop reaching out to him once they found out he had it and would describe how doctors would keep their distance from him. Illness can be defined by the human experience of having to live with the symptoms of pain and suffering. The definition of illness and disease is summed up well in Illness Narratives. Since illness is an experience one has to go through, people can become demoralized, lose hope, or feel as if they are a burden to the people that are taking care of them (Kleinman, 1988, Chapter 1). Disease refers to the problem from the physician’s perspective meaning the experience of one who lives with the illness is not taken into account. There is great danger in not considering the lived experience of a person with a disease and the many obstacles they encounter. HIV/AIDS is viewed as a major threat to the major values of American society. In today’s society, people with AIDS are blamed for their “promiscuous sexual practices” (Kleinman, 1988, Chapter 1). AIDS in a way brands the person with the idea that they deserved it for the way that they were acting (Kleinman, 1988, Chapter 1).

In the case of Horacio Grippa, he not only had to deal with the symptoms that HIV/AIDS had on his body but also the way that he was treated because of it. His illness defined him in a way that got him kicked out of his apartment and made him lose his job as a teacher. He also mentioned how his nurses seemed scared to come close to him and how the doctors he would encounter would wear masks and gloves (Kleinman, 1988, Chapter 10). As a person who wants to become a doctor someday and knows someone with HIV/AIDS, reading this was emotionally taxing. For a patient, seeing a doctor should be a relief and someone that they can count on. The fact that some patients are still discriminated against because of having HIV/AIDS is truly concerning. When I become a doctor, I would hope to treat everyone with respect and make them feel safe and welcome because they already come to see you in a very vulnerable position.

Disparities with HIV/AIDS that Lead to Easy Targets of Shame Along With Ways of Improving as a Medical Provider

In the early stages of HIV/AIDS, the predominantly affected were homosexual and bisexual men since they made up 63% of AIDS-reported cases (Bosh et. al). In 1986, the CDC began to report the disproportionate effect that HIV/AIDS was having on African Americans and Latinos (“A Timeline”). The prevalence rate of HIV for African Americans is nearly eight times greater than for white people and three times higher than for Latinos (Geary). These statistics show that HIV/AIDS is common in minority communities that are already great targets for discrimination and shame. This can also make it easier to categorize a group of people and make them feel responsible for the high prevalence rates of HIV/AIDS.

Source: CDC Fact Sheet *Today’s HIV/AIDS Epidemic,* 2016

There are many ways of improving the experience that patients encounter, especially when it relates to stigma and shame. As people that work in a clinic or are doctors, one can be understanding of the challenges that patients have such as obstacles that could cause them to need more time to make it to appointments in the example of using a wheelchair. Doctors must overcome certain biases that they are taught and always listen to their patients by not disregarding the symptoms that they are having. There must also be a reconceptualization of medical care where the physician shows empathy and takes the patient seriously. Although this will not solve all the problems and biases experienced by the patient, it would be the first major step in making them feel heard and important (Kleinman, 1988, Chapter 2).

References

“A Timeline of HIV and AIDS.” HIV.gov, www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline.

Bosh, KA, Hall, HI, Eastham, L, Daskalakis, D.C., Mermin, J.H. Estimated Annual Number of HIV Infections–United States, 1981-2019. MMWR Morb Wkly Rep. 2021 Jun 4;70(22):801-806. Doi 10.15585/mmwr.mm702a1. PMID: 34081686; PMCID: PMC8174674.

“CDC Fact Sheet: Today’s HIV/AIDS Epidemic.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, Aug. 2016, https://www.cdc.gov/nchhstp/newsroom/docs/factsheets/todaysepidemic-508.pdf

Geary, Adam A. Antiblack Racism and the AIDS Epidemic State Intimacies. Palgrave Macmillan, 2014. Accessed October 8 2022.

“HIV and AIDS: The Basics.” National Institutes of Health, U.S. Department of Health and Human Services, hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-and-aids-basics.

Kleinman, Arthur. The illness narratives: Suffering, healing, and the human condition. Basic Books, 2020. https://books.google.com/books?hl=en&lr=&id=tV_ODwAAQBAJ&oi=fnd&pg=PT8&dq=illness+naratives+suffering+healing+and+the+human+condition&ots=vHKpCH05FJ&sig=bEjhFgb8K9POln0DYexQAwdBclA#v=onepage&q=illness%20naratives%20suffering%20healing%20and%20the%20human%20condition&f=false

“What Are HIV and AIDS?” HIV.gov, www.hiv.gov/hiv-basics/overview/about-hiv-and-aids/what-are-hiv-and-aids/.

Adding to the Medical School Curriculum

Anna Nunag

27 March 2023

Mission trips to South America. Independent student research. Leadership positions. Summer volunteering. These are the ways applicants try to demonstrate to medical schools that they are well informed individuals, with a commitment to research and serving the humanity of others.

One consistent theme throughout this module has been the need for a change in culture for both current physicians and medical students entering the workforce. Students are assessed at a high standard to get into medical school, but how is this same well-roundedness fostered once applicants are accepted into medical school?

I looked into current stances of how these assets are addressed in medical schools, and while it varies from school to school, efforts are being made to put in place ways for medical schools to help their students foster research and awareness for rare diseases, public health concerns, and empathetic interactions with patients.

Awareness for Rare Disease

One improvement in the medical field that this module has shown light on is the lack of research and awareness for Rare Diseases (RDs).

According to the World Health Organization (WHO), 400 million individuals are living with rare diseases and from a study surveying preclinical medical students, 92% feel “ill-prepared to provide rare disease care” (Ayyappan, et. al, 2022).

…from a study surveying preclinical medical students, 92% feel ‘ill-prepared to provide rare disease care’

For example, Chronic Fatigue Syndrome or CFS is one contested illness, defined as an “experience [of] incapacitating fatigue” and “symptoms [persisting] for at least six months and cannot be explained by any other diagnosis” (Walker: 2012).

CFS is “without clear biomedical indicators” and shares many variable symptoms with other diseases, making it hard to pinpoint and define, and difficult to conduct clinical research trials on, ultimately leading to stigma around this contested illness (Walker: 2012).

An article in the Journal for Vascular Anomalies, tactics of how medical schools could incorporate rare disease into curriculum while acknowledging the difficulty in diagnosing these contested diseases with no explicit etiology or symptoms.

These tactics include teaching an adequate vocabulary surrounding RDs and keeping students informed on research efforts, and some schools and student groups are pioneering this effort

For example at the University of Pennsylvania, student leaders of the ‘Rare Disease Interest Group’ have created an elective course containing “rare disease-specific information”, incorporating current RD research into lectures, and “training students to recognize rare diseases and to be cognizant of the unique needs and experiences of rare disease patients” (Ayyappan, et. al, 2022).

Some medical schools are making progress by offering RD in the form of an elective, but it is not a mandatory requirement standardized over all medical schools.

Many medical schools are also distinguished research institutions, and RDs can be one area of investigation that is incorporated into curriculum so that more medical students feel confident and informed enough to tend to this patient population.

Public Health discussions

Next, demonstrating that an applicant is well-informed or involved in their community is an important factor for applicants, but these values are not fostered to the same extent in the actual curriculum.

According to an article from the National Institutes of Health, curriculum is a reflection of how “most institutions are evaluated on the basis of molecular science curricula and student performance is assessed via standardized testing on molecular science” rather than ‘relevant disciplines’ of public health concerns such as socio-economic and socio-ecological influences on health in communities (Rao, et al, 2020).

As the United States population is living longer and becoming increasingly diverse, this creates an increasing need for physicians to have an understanding of socio-economic factors and a “cultural competence” (Rao, et al, 2020) in order to treat the “complex root causes of illness” in this future patient population.

“…the United States population is living longer and becoming increasingly diverse”

The Crawford article, “Health as a meaningful social practice,” addresses one public health theme by arguing for the way in which health in the United States has become a form of social control, reinforcing social norms rather than taking into account societal factors and disparities that exist between communities.

The Crawford article argues that health is viewed as personal responsibility rather than a reflection of socio-economic situation.

This is seen through how “white, middle class Americans [are] privileged in being able to adopt healthy lifestyles, “ (Crawford: 2006) because they have adequate resources to maintain their health.

On the flip side, those from a poorer demographic and more likely to be in worse health and this is not a reflection of personal failure according to Crawford because of the role of societal factors in personal health.

This understanding of health as a form of social control is just one public health point of discussion that can be analyzed in medical school. This would allow for future physicians to both understand a patient population through the context of societal factors, but also understand how a patient grapples with their health in a society that views it is the fault of the individual.

Tools for patient-doctor interactions

Lastly, empathy is another character element that medical schools like to see evidence of, and ‘delivering patient centered care’ is often a key term used in medical schools mission statements.

Still, there are no standardized efforts across medical schools that directly address appropriate tools to empathize and approach patients grappling with their chronic illnesses.

The article “Illness Narratives” describes the stigma that chronically ill people face and other stresses that patients and their families experience as a result of illness.

The article describes the important role that practitioners have in controlling the fear or anger, “[restoring] confidence in body and self” and, “[educating] sick persons to escape both excessive feelings of guilt over failures in life activities and jealousy towards others” (Kleinman: 1988).

For example, in the “Illness Narratives,” a patient with severe eczema felt shamed standing in front of physicians and their medical students inspecting his body. He felt shamed and exposed as a result of the physicians being insensitive to his privacy and respect.

Empathy to address these interactions is not a ‘hard science’ that can be taught or tested, but may come through experience and being better informed on how the effects of illness are felt by a patient and their family and how they internalize the societal stigma placed on a patient.

“…how the effects of illness are felt by a patient and their family and how they internalize the societal stigma placed on a patient”

A course that directly addresses the importance of empathy in patient-physician interactions is not standardized, but it is possible that some schools may offer electives, such as at Temple University (Ayyappan, et. al, 2022). At this medical school part of the curriculum is having students practice interacting with patients with disabilities such as volunteer patients with congenital muscular dystrophy, with the goal that “such initiatives would humanize rare disease, training students to consider in addition to biological and clinical data, the human that lies beneath” (Ayyappan, et. al, 2022).

While offering an elective is making progress, it does not allow for appropriate tools for all future physicians expected to deliver ‘patient centered care’ and approach a patient grappling with their disease.

Across all medical schools, there is no standardized way that Rare Diseases, public health, and strategies to approach patients are addressed.

Continuing Medical Education may not be realistic avenue to change the way physicians think and what they value, so this proposal might be most effective by targeting the future medical doctors at the lowest level: medical schools.

The medical school curriculum should show that they are committed to developing well rounded, future physicians to reflect how they are valued in medical school applications in an evolving patient population.

Works Cited

Gawande, A. (2017). The Heroism of Incremental Care. The New Yorker.

Ayyappan, V., et. al.(2022). Spotlighting Zebras: A Role for Medical Students in Shaping Rare

Disease Care. Journal of Vascular Anomalies. https://journals.lww.com/jova/Fulltext/2022/03000/Spotlighting_the_Zebras__A_Role_for_Medical.4.aspx.

Walker, J. (2012). Researching Contested Illnesses: The Case of Chronic Fatigue Syndrome \(CFS). Boston University School of Medicine.

Rao, R, et al. (2020). The Evolving Role of Public Health in Medical Education. National Institutes of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7344251/.

Crawford, R. (2006). Health as a Meaningful Social Practice. An Interdisciplinary Journal for the Social Study of Health Illness and Medicine.

Kleinman, A. (1988). Illness Narratives: Suffering, Healing, and the Human Condition.

Can too much health be a virus?

Examining the impact of the early stages of COVID-19 on health autonomy and ideals

The heart of the COVID-19 pandemic is over. Due to low infection and mortality rates, the pandemic is no longer deemed a public health emergency by the Department of Health and Human Services. Though much of this success is attributed to effective vaccines and treatments, personal efforts like isolation and mask-wearing also mitigated the impacts of the virus. These actions were once espoused before medical interventions were widely available, and they emphasized personal responsibility over health. This messaging regarding COVID-19 safety underscored health autonomy, but this mentality became a slippery slope in terms of excessive health consciousness and unrealistic ideals promoted via social media.

Increasing Health Autonomy

In the advent of COVID-19, the primary messaging from health authorities such as the Centers for Disease Control (CDC) and the World Health Organization indicated that each person was in control of their own virus prevention. You had the power to protect yourself by social distancing and washing your hands, and if you contracted the virus, that was due to a failure on your part to follow the safety measures. It followed that this sentiment of responsibility over one’s personal health expanded into avenues beyond COVID prevention. A hyper-awareness of individual health and wellness grew early in the pandemic, exacerbated by the lack of access to outside medical services. With an inability to seek professional care, we became our own doctors. Crawford’s claim that “personal responsibility for health is widely considered the sine qua non of individual autonomy and good citizenship” applies to our widespread focus on how we could best protect ourselves and those around us by adopting the most healthy practices (Crawford, 2006, 402).

“Today, the common assumption is that health must be achieved.”
Robert Crawford (Crawford, 2006, 402)

These practices manifested themselves in numerous ways. From at-home workouts to wearable technology use, methods of improving and tracking physical health became predominant. Acknowledging that quarantine could lead to a sedentary lifestyle, governmental organizations heavily promoted the importance of physical activity, further intertwining the political and private sphere via health consciousness (Crawford, 2006, 403). Regular exercise was also advertised for its mental health benefits in combatting the isolation associated with social distancing, along with practices like mindfulness activities and meditation. These actions were highlighted as things that one can do without risking contact with COVID, underscoring solitary actions that one can take over their health.

Social Media and Self-Improvement

In addition to the push from governmental and health organizations for an increased health focus, social media was also a significant promoter of self-care throughout the pandemic. When I think of social media during the first month of lockdown, I am immediately reminded of the rampant TikTok health trends, particularly the exercise challenges like those from fitness influencer Chloe Ting. Teenage girls would participate in Ting’s exercise videos, like “Get Abs in 2 WEEKS” and “Do This Everyday To Lose Weight ” and post their body composition results. These videos about lifestyles centered around exercise and nutrition encouraged at-home healthy behaviors among millions. However, they also promoted unrealistic body expectations and the attitude that anyone can make their body look like Chloe Ting’s as long as they have the discipline to do so. Similar to Barbara Ehrenreich’s analysis of 1970s exercise culture, social media during COVID heavily promoted physique as “a status symbol” and fitness as a “culture that inflicts ‘steep penalties for being overweight’” (Winant & Gallagher, 2018).

The promotion of these activities, however, was by those who could afford the time to focus on their self-care. When these social media videos went viral, it created the illusion that everyone was using their quarantine as the opportunity to be productive in self-improvement. In reality, COVID-19 took away many’s abilities to focus on their health. This was especially true for at-home care workers, as “over one in ten women report[ed] that they [had] new caregiving responsibilities as a result of the pandemic” (Ranji et al., 2021). Many of these caregivers were not able to seek outside forms of stress relief and social support, causing physical and mental health repercussions (Harmon, 2021). In fact, a CDC survey found that “40 percent of caregivers for adults reported anxiety or depression symptoms” throughout the pandemic (Harmon, 2021). While social media advertised quarantine as free time allotted for self-care, only those with privilege could use it as so. This further contributed to social media as a source of unrealistic expectations and lifestyles related to health during the pandemic.

“It is only the wealthy who have the resources to maintain the illusion of an integral and bounded self, capable of responsible self-care and thus worthy of social status.”
Barbara Ehrenreich in “Natural Causes” (Winant & Gallagher, 2018)

The Lasting Influence

At the beginning of lockdown, COVID considerably impacted our perception of health autonomy, and the effects persist today. Speaking from personal experience, I am much more cognizant of my efforts to avoid sickness than before the pandemic. I have always attempted to prioritize sleep and minimize stress levels, but I am now aware of how these efforts aid my immune system in warding off disease. Additionally, plagued by the aforementioned motivational lifestyle videos on my social media feed, I adopted a rigid exercise regimen to keep myself in shape at the beginning of quarantine. This contributed to a hyper-awareness of my body’s conditions. I know of many that have had similar experiences, and I have attempted to let go of this self-consciousness since coming to college. Though the stress of individual responsibility over healthy behaviors did wonders in reducing the viral impacts of COVID-19, the long-lasting effects in terms of health consciousness and unrealistic ideals persist today.

References

Crawford, R. (2006). Health as a meaningful social practice. health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 10(4), 401-420. 10.1177/1363459306067310

Harmon, K. (2021, August 4). America isn’t taking care of caregivers. Vox. Retrieved March 26, 2023, from https://www.vox.com/22442407/care-for-caregivers-mental-health-covid

Ranji, U., Fredericksen, B., Salganicoff, A., & Long, M. (2021, March 22). Women, Work, and Family During COVID-19: Findings from the KFF Women’s Health Survey. KFF. Retrieved March 26, 2023, from https://www.kff.org/womens-health-policy/issue-brief/women-work-and-family-during-covid-19-findings-from-the-kff-womens-health-survey/

Winant, G., & Gallagher, S. (2018, May 23). Barbara Ehrenreich’s Radical Critique of Wellness Culture. The New Republic. Retrieved March 26, 2023, from https://newrepublic.com/article/148296/barbara-ehrenreich-radical-crtique-wellness-culture

The Power of Communities of Care

Mae Czerwiec • March 26, 2023

During the AIDS epidemic, my aunt, MK Czerwiec, served as a nurse in the AIDS Unit at Illinois Masonic Hospital in Chicago, IL. Like any nurse, the stories of the terrible things she saw during her time are multitudinous, and the experience was rife with emotional heaviness. But unlike other nurses, she was encouraged to be creative, break the rules she’d learned in nursing school, and provide care to patients through non-traditional medical and non-medical methods (Czerwiec 2017). In the 1980s and 90s, at the height of the AIDS epidemic in the US, patients required more care than medicine alone could provide them.

Six years into the AIDS epidemic, the mortality rate was nearly 100% (France 2012). Doctors didn’t know what caused it or how it spread: it was new and terrifying. Affluent, otherwise healthy young men began showing up to emergency rooms with skin lesions that were hallmark signs of Kaposi’s Sarcoma, and pneumonia would kill them soon after (France 2012). As it became apparent that the disease had a disproportionate prevalence in LGBTQ+ populations, particularly men who have sex with men (MSM), anti-gay backlash ensued against victims of the disease– from laypeople to lawmakers, there were many who believed these men were being deservedly punished for their moral sin (France 2012). Even as municipal hospitals in hotspots like New York City became overwhelmed with AIDS patients, there were incentives not to diagnose the disease; after all, if it was diagnosed, the government and the medical establishment would have a duty to find a treatment (France 2012).

AIDS Incidence and Mortality in San Francisco. From “40 Years of AIDS: A Timeline of the Epidemic” by Lisa Cisneros at the University of California San Francisco.

In his book The Illness Narratives: Suffering, Healing, and the Human Condition, author Arthur Kleinman emphasizes that in our society, illness has meaning. It has significance. Illness is not merely something that happens to us, but something that we are. “[L]ike a sponge,” Kleinman writes, “illness soaks up personal and social significance from the world of the sick person” (Kleinman 1988, 31). In the case of the AIDS epidemic, patients were not only sick with a disease that was rapidly-progressing, disfiguring, and generally fatal within a few years, but they were made to believe that their illness was their own fault, and that they deserved both the physical suffering and the social disgrace that accompanied it. This is what Kleinman and others refer to as stigma, and for the LGBTQ+ community, it was almost as crippling as the epidemic itself. Historically, stigma described a physical mark of public disgrace, akin to the Star of David forcibly sewn onto the clothes of Jewish people by the Nazi Regime, although over time, stigma has come to refer to the shame more than the mark (Kleinman 1988, 169). Patients who died of AIDS in hospitals were often put in black trash bags, and some funeral homes refused to hold their services (France 2012). Even queer people who weren’t marked with the physical symptoms of AIDS, like Kaposi’s Sarcoma, were subject to the stigmatization that resulted from the disease. Battling both an incurable disease and an unfavorable public image, how were victims and advocates to respond?

The answer lies in forming communities of care.

My aunt, mentioned earlier, is a lesbian, and she saw part of her care for AIDS patients as a duty to her community. And a lot of AIDS nurses were lesbians– the TV series Pose on Hulu, which highlights Black and brown ballroom culture of the 1970s and ‘80s, features Sandra Bernhard playing the feisty and tenacious Nurse Judy– who also felt called to stand up for and support fellow queer people. But medicine was just one part of the AIDS care network. Also of importance was collective health advocacy, seen most notably in the work of the AIDS Coalition To Unleash Power (ACT UP), an AIDS activist group formed in New York City in the 1980s. One member described ACT UP as a group of “artists and hipsters” who came together to gain the scientific knowledge of AIDS and the virus that causes it (HIV) necessary to meet politicians and scientists at their level and push for real change (France 2012). They were eventually able to persuade Dr. Anthony Fauci and the NIH to allow lay AIDS activists to sit on their advisory boards and have an input in the process of AIDS research and drug development. The involvement of both gay and straight scientists and professionals who were willing to do this educational work also formed parts of these care networks. One activist remarked that he believed every AIDS drug that is available today has ACT UP at least partially to thank (France 2012). Without groups of diverse but like-minded folks coming together to provide a common good for each other, the already-delayed response to the AIDS epidemic would have resulted in devastating outcomes.

From the Museum of the City of New York. Photo by Lee Snider.

The power of care networks isn’t restricted to those with stigmatized illnesses like AIDS. The medical establishment is often hostile and ineffective for people of color, regardless of their perceived health status. In the 1970s, the Black Panther Party responded to this systemic neglect of Black patients by forming its own health program, concentrated in the local facilities known as the People’s Free Medical Clinics (PFMCs) (Nelson 2013). The clinics were created in direct response to the Party’s perception of the “circumstances surrounding illness” in the treatment of people of color, which resulted in their avoidable deaths at institutions of white medical power (Nelson 2013, 79).

Like ACT UP, the Black Panther Party was initially composed of laypeople, concerned citizens identifying as members of a marginalized group who had a thirst for activism but lacked the expertise to bring necessary resources to their respective communities. Part of the power of both organizations came from their ability to draw in professionals sympathetic to their respective causes who were willing to do the work of educating and supporting the ultimate goals of activists who may have been more personally invested in the cause. Most of these professionals offered their expertise on a volunteer basis; for example, University of Washington medical school students and faculty offered services to the Seattle-based Sidney Miller PFMC (Nelson 2013, 97). Once again, a diversity of skill sets, from organizing and advocacy to first-aid and education gave power and credibility to the health movement.

I think when we look back on these two health advocacy movements, it can be all too easy to relegate them to their respective moments in history. But it’s critical that we do not let these movements die with their founders– their struggles are not over. We know that Black people in the United States have significantly worse health outcomes than their white peers, particularly Black women of reproductive age (Hill, Artiga, and Ranji 2022). We know that there are over 35,000 new HIV infections in the US each year, with disproportionate effects on Black and Latinx LGBTQ+ communities (Kaiser Family Foundation 2021), and that LGBTQ+ rights are under attack every day– the ACLU is currently tracking 430 anti-LGBTQ+ bills in state legislatures (ACLU 2023). Thinking intersectionally, we know that all of these health risks are amplified for Black trans women and trans women of color. And we know what the answer is to these threats, because our communities have answered the call before.

In the last election cycle in my tiny hometown, the hot button issue was funding for public works, particularly budget allocations for local emergency services. One particular focus was on whether it was worthwhile to purchase a new ladder truck– devastating blazes are uncommon, opponents argued, and our small town’s funds would be better spent on other public goods; neighboring fire departments would be more than capable of providing us with their aid should we require it. But the supporters of the fire truck were adamant. Overnight, signs popped up in front yards up and down our little blocks: WE NEED OUR OWN TO SAVE OUR OWN! Perhaps the fire truck metaphor is silly, but this is what I think of when I think of health advocacy and activism. The work only gets done when those of us who are affected the most deeply rally together around a common cause. Change happens within communities. When we shout together, our voices echo.

References

ACLU. 2023. “Mapping Attacks on LGBTQ Rights in US State Legislatures”. https://www.aclu.org/legislative-attacks-on-lgbtq-rights
Czerwiec, MK. 2017. Taking Turns. University Park, PA: Penn State University Press.
France, David, director. 2012. How to Survive a Plague. Sundance Selects. 109 min.
Hegedus, Eric and Robert Rorke. 2019. “Sandra Bernhard: ‘Pose’ recalls horror of early days of AIDS”. New York Post. https://nypost.com/2019/06/21/sandra-bernhard-pose-recalls-horror-of-early-days-of-aids/
Hill, Latoya, Samantha Artiga, and Usha Ranji. 2022. “Racial Disparities in Maternal and Infant Health: Current Status and Efforts to Address Them”. Kaiser Family Foundation. https://www.kff.org/racial-equity-and-health-policy/issue-brief/racial-disparities-in-maternal-and-infant-health-current-status-and-efforts-to-address-them/
Kaiser Family Foundation. 2021. “The HIV/AIDS Epidemic in the United States: The Basics.” https://www.kff.org/hivaids/fact-sheet/the-hivaids-epidemic-in-the-united-states-the-basics
Kleinman, Arthur. 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. Basic Books.
Nelson, Alondra. 2013. “The People’s Free Medical Clinics” in Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination. Minneapolis, MN: The University of Minnesota Press.

Medicalization’s Effect on Care Relationships

“Spouses are central in supporting and coercing one another to obtain healthcare and these dynamics are shaped by gender and couple type”
(Reczek 566)

One of the most striking things about the culture of healthcare and medicine is the overmedicalization of women’s bodies compared to the passive medicalization of men’s bodies. In numerous instances, primarily related to reproductive health, women’s bodies have been a hub of the overextension of medicine. In these cases, medicine can interfere with natural processes of the female body when it’s not necessary and not wanted by the women themselves. On the other hand, this overmedicalization is not seen with men’s bodies. Rather, when a problem arises, men and society have pushed medicine, through passive medicalization, to come up with solutions. When reflecting on this and other course material, I was really curious about the connection that overmedicalization and passive medicalization have with caring for others and the role women play as healthcare advocates in heterosexual relationships. In addition to other factors, it seems that because women’s bodies and health are so medicalized, they are more hyper-aware of medical needs compared to their partners.

Medicalization of Women’s Bodies

The overmedicalization of women’s bodies can be seen most prominently in reproductive health. As we discussed in class, the overmedicalization of childbirth is a prime example of how medicine has interfered with a natural process in a way that is not exactly necessary. Many maternity care experts have acknowledged that medical interventions are not entirely necessary for childbirth and can actually increase risk (CHCF). Not only do these medical interventions, like not being able to walk around and being forced to lay in a supine position make childbirth harder, it can also make it less safe (CHCF). On top of this, medical resources end up being wasted during childbirth on things that are not needed (CHCF). Because medicine has interfered so much with women’s bodies and natural female processes, women have likely become more aware of every part of the health and body. Therefore, I think they may be more inclined to seek medical intervention when necessary because they have been conditioned to believe that everything is a medical process in some way.

Medicalization of Men’s Bodies

Contrastingly, men’s bodies have not been medicalized in the same way. Because men’s bodies have not been medicalized in the same way as women’s, there is more confusion amongst men and the medical field whether some of the issues that afflict them are truly biological problems. For instance, the creation of Viagra as a treatment for erectile dysfunction came out of what is called passive medicalization, where people pushed for this drug and dysfunction to be considered something in the realm of biomedicine. Men and their partners sought medical intervention in the case of ED because it is a social problem and physicians may have been uninvolved or minimally involved in the past (Carpiano 443). Because of our social and cultural views regarding normal sexual function, a need for Viagra was created and pushed for. Therefore, factors outside of the medical field are responsible for the creation and push for Viagra rather than the medical field intervening in what is likely a largely normal process of aging (Carpiano 447). Evidently, men sought out medical intervention in ED because of cultural norms, thereby demonstrating that men have not been as conditioned like women to automatically view everything as medical problem. Instead, medical intervention was sought because of societal pressures and personal insecurity.

Potential Effects on Care Relationships

The difference in the way that medical intervention is sought between men and women due to the different medicalization of their bodies I believe manifests itself in the care relationships we see in heterosexual couples. Even though a large number of factors play into women taking on the role of healthcare advocate for both themselves and their male partners, it seems that the overmedicalization of their bodies may be a leading reason why women tend to take on that role. Various studies have shown that “women in both heterosexual and lesbian relationships do more care work for a sick spouse than men in gay or heterosexual relationships” (Reczek 557). While men still occasionally perform care work, it is not in the same manner as women and is often more instrumental, as Reczek describes (Reczek 564). This lends itself to women often coercing their male partners into seeking medical help for issues. This repeats the similar cycle of ED, where it does not seem like it is the men themselves believing that they have a medical issue but society and their partners telling them that there is something that biological intervention can fix. As Reczek notes, even if men recognize that they are sick, they often don’t take the next step in obtaining medical care. If female partners did not coerce or make their male partners insecure about certain aspects of their health in an effort to get them to see the doctor, then men might not seek medical intervention at all.

Conclusion

When reflecting on these readings and the culture of healthcare and medicine, t appears that the overmedicalization of women’s bodies has led to their increased care work in some way. There should be more of a split between both men and women caring for their bodies, regardless of societal or medical pressures. While I think it may be too late to completely change the role that women play in being healthcare advocates for both themselves and their male partners, if less focus was put on women’s natural body processes and more focus was put on men being their own healthcare advocates, then perhaps we would see a change in the dynamics of these relationships. However, I do not want to encourage medicine to stay away from women’s bodies completely as much about women’s health has been learned in the last century. Yet, I think that the emphasis can be lessened and there can be an effort to understand women’s bodies without necessarily medicalizing every part of it.

Works Cited

Carpiano, Richard M. “Passive medicalization: The case of viagra and erectile dysfunction.” Sociological spectrum 21.3 (2001): 441-450.

“Infographic: The Overmedicalization of Childbirth.” California Health Care Foundation, 21 Aug. 2019, https://www.chcf.org/publication/infographic-overmedicalization-childbirth/#related-links-and-downloads.

Reczek, Corinne, et al. “Healthcare work in marriage: how gay, lesbian, and heterosexual spouses encourage and coerce medical care.” Journal of Health and Social Behavior 59.4 (2018): 554-568.

Jogging to the Carrot and from the Stick: The Dual Motives that Fueled the Paradigm Shift of the Exercise Industry

Michael Murakami

One fall in middle school I played for a Japanese baseball team. Although I speak little Japanese, a friend of mine recruited me when a teammate moved back to Tokyo. Practices and games mostly mirrored my other teams, except for conditioning. We worked the same routine at every practice which far exceeded a warm-up jog and stretching. I struggle to recall many of the exercises (granted, most names were in Japanese) except for two. The first began when our head coach yelled “Spi-der-man” in three, slow, drawn-out syllables. We repeatedly propped ourselves up with arms and legs extended outward and bodies held inches above the ground until we collapsed. The other consisted of shutter runs in the gym under time pressure until you either collapsed or quit. As the least fit member of the team, I felt embarrassed during conditioning since I always quit first. Even more confusing, at the end of each practice, we lined up and bowed, yelling “Arigato gozaimashita!” (thank you very much) to our coaches for leading the workout. Although perhaps atypical for youth sports, this experience illustrates a modern characteristic of exercise: we physically punish ourselves in the name of fitness out of a desire to avoid negative outcomes alongside pursuing positive outcomes…and then give thanks for the suffering. The old carrot that motivated exercise, the desire for health and wellness, recently became accompanied by a larger fear of the stick: stigmas and public shame.

The Carrot and the Stick¹

Posited Virtues of Exercise

Exercise as an intentional activity (rather than indirectly resulting from manual labor) initially gained popularity for its positive physical and mental outcomes. Before analyzing the recent shift in mindset surrounding exercise, it is essential to acknowledge the benefits of and reinforce the need for a moderately strenuous exercise routine. First, exercise yields numerous positive physical outcomes. In his paper, Health Benefits of Exercise, Greg Ruegsegger explains how exercise is strongly correlated to an extended lifespan and the delayed onset of dozens of conditions and diseases, which improves peoples’ quality of life.² Further, exercise benefits mental health. Kathleen Mikkelsen explains in Exercise and Mental Health how activity alters peoples’ moods positively and improves symptoms of anxiety, stress, and depression.³ Moreover, in the long term, exercise, especially endurance training, improves the overall mental health of those who partake.

On the one hand, this makes sense since better physical shape can make parts of life easier. Moving and performing enjoyable activities may reasonably increase one’s happiness. On the other hand, rather than being hedonically motivated, exercise may improve one’s quality of life and mental health by escaping from the negative societal implications of being viewed as “unhealthy.”

Modern culture rewards good health and, to people who fall into the “healthy” category, the positive attributes of exercise appear to be an achievable outcome. While this belief may seem reasonable and even beneficial in an isolated state (one may believe that these positive affirmations of exercise would encourage the healthy behavior of exercise), the implicit negative sentiments created about those determined to be in “poor” health are undeniably damaging. The following three sections will illustrate different sides of the same coin: negative stigmas surrounding poor health and positive reinforcement of dangerous “healthy” mindsets and activities.

Stigmas of a Lack of Exercise and Poor Health

In chapter 10 of Illness Narratives, Arthur Kleinman describes how we derive the term “stigma” from Greek, referring to “marks that publicly disgraced the person.”⁴ Especially in ancient societies, many stigmas plagued societies’ social structure. Societies commonly developed stigmas about race, gender, wealth/social class, and a plethora of other visible characteristics. In modern society, as we attempt to reconcile historical inequalities equitably, new stigmas have arisen in the name of a seemingly “beneficial” characteristic: health. The primary issue is that stigmas surrounding health create a false sense of causation between the size/shape of the body (a physical attribute) and the overall health of a person (a generally non-physical characteristic). The result is that stigmas against those viewed as “unhealthy” only target people who appear to be overweight, which dangerously fails to capture reality.

To disprove that physical appearance and health are necessarily causally related, I will provide two examples. First, some people eat diets that are objectively unhealthy (per standard medical dietary standards) and/or perform health-damaging activities like smoking or vaping and appear healthy since their bodies have quicker metabolisms or the effects of their actions are long-term, not yet harming the individual. Since stigmas attack physical characteristics, they would not be stigmatized as “unhealthy” since (often) the consequences of their actions are not realized in the short-term.

The second example is the overuse of socially acceptable substances. The majority of US adults consume caffeine daily,⁵ and a large number drink or otherwise consume unhealthy amounts (greater than the recommended maximum of 400 mg per day). In fact, popular energy drinks like BANG and Reign contain nearly this much caffeine in each can. However, given that caffeine is a socially acceptable, productivity-boosting drug and it is difficult to measure another’s consumption throughout the day, certain substance abuse remains generally unstigmatized.

Since the results of these activities are not generally visible and/or are socially accepted, the seemingly only prevailing stigma attacks people labeled as “unhealthy” due to appearing overweight. Even worse, stigmas are not limited to adults. One notable campaign attacked children for their obesity in the early 2010s. Strong4Life created advertisements like the one below which demonizes fat children and asserts the need for lifestyle changes. It is truly unimaginable that any marketing department would consider this a promising advertisement, which could only happen after they approve it as acceptable. Neither feels right.

Medicalization of Exercise

Once understanding this stance taken on people viewed as “unhealthy,” it is next important to understand how society changed as a result. In Medicine as an Institution of Social Control, Irving Zola describes how medicine and “health” became an institution of social control. This shift results from medicalization, or the integration of medicine and medical research into everyday activities that otherwise would be separated.⁷ Play for children and exercise for adults recently became medicalized, from programs like Play 60⁸ to the daily tracking of activities towards goals like counting steps, measuring the distance walked, and tracking heart rate on devices like Apple Watches. Many industries took this a step further, with employers pressuring employees to exercise by rewarding tracked activity monetarily (my firm, PwC, utilizes a program named VirginPulse⁹) and insurers creating programs called “interactive life policies”¹⁰ which personalize rates and create discounts based on continually tracked health metrics.

While some people enjoy optimizing their exercise and routines, this data collection represents a dangerous external motivation that destroys the equilibrium activity level for others. External motivation can result from third parties who directly benefit from someone becoming more “healthy,” such as an employer or insurer, or more innocently from friends. Apps such as Apple Fitness+, Strava, and Garmin Connect, all three of which I personally use, motivate activity through comparisons to friends and direct competition against others for more calories burned, miles run, etc. Since the data is public, even those considered “healthy” by society face new stigmas if they fail to hit their move goals on any given day. Such layered stigma and motivation perpetuate and exponentiate the toxic nature of the fitness industry by creating a desire for perfection in action and perfection in results.

Rotten Carrots: The Faux Acclaim of Physical Perfection

When someone pursues the health benefits of exercise to an extreme, the positive physical and mental health outcomes quickly disappear. A factor creating the culture of excess in exercise is blatant in fitness-related social media, specifically in the language influencers use. The industry is infested with lies and unreasonable extremism which pollute the mindset of a balanced person. First, social media highlights influencers who mislead audiences about their lifestyle, the use of performance-enhancing drugs (PEDs) to exponentiate their outcomes, and more. The average person is constantly exposed to unattainable physiques which may swing them in one of two directions: either their relative lack of progress compared to a PED user discourages them from continuing a fitness lifestyle or it creates a mindset to overtrain in pursuit of unrealistic outcomes.

The first outcome is damaging simply because it discourages the pursuit of a healthy and balanced lifestyle. Any of the aforementioned positive outcomes of fitness disappear and the person’s overall quality of life generally decreases. This is clearly undesirable.

The second outcome is potentially more dangerous. Although some of the physical benefits of exercise relative to a sedimentary life may still be realized at the highest level, many mental health benefits are quickly wiped away. This unfortunate outcome happens for a few reasons. First, as training becomes a larger part of someone’s day, other aspects of life must be minimized. The marginal benefit of additional exercise is mitigated by losing time for sleep, relationships, and other activities, all of which damage a person’s mental health. Further, the language found in the extremes of the fitness industry creates punishing mentalities that take mental and physical tolls on people. A clear example comes from David Goggins, former Navy SEAL turned fitness influencer who in his social media clips and books routinely encourages this mentality of excess and extremism with quotes like:

“We’re either getting better or we’re getting worse,”
“Don’t stop when you’re tired. Stop when you’re done.”¹²
David Goggins, Can’t Hurt Me

The Exercise Paradigm Shift: From Play to Work

Goggins and similar fitness influencers exemplify the overall paradigm shift found in exercise that Gabriel Winant describes succinctly; “Once associated with play, exercise is now closer to a form of labor: measured, timed, and financially incentivized by employers and insurers.”¹³ Here we find a dramatic shift. In our society fueled by a desire for progress and productivity, a growing proportion of our lives transform into new forms of labor. And much like other so-called jobs, forms of workaholism and gross excess appear. This flawed view of exercise that resulted from this shift quickly damaged society.

In the end, balance is important. There is no question that there are various benefits to physical activity that ought to be neither overlooked nor ignored, but taken to an extreme, the fruits of our labor quickly become rotten carrots that we endlessly continue to pursue. Although difficult in a productivity-focused world, it is imperative that our culture accept and normalize a moderate, healthy amount of exercise without slipping into unnecessary extremes or abandoning fitness altogether. In my opinion, this is most important for children. Rather than the rigid minds of adults who may already habitually follow an extreme, children should be shielded from exposure to an unhealthy form of labor. Such a shift would allow future children to not fear Sunday morning baseball practice as I did, but to look forward to time with friends playing a game they love. At a minimum, society ought to let kids be kids again by encouraging them to play in any condition, rain or shine, rather than mandate exercise and conditioning.

Works Cited

Taylor, Justin, “Donkeys, Carrots, Sticks—and the Gospel.” The Gospel Coalition, 5 Dec. 2011, www.thegospelcoalition.org/blogs/justin-taylor/donkeys-carrots-sticks-and-the-gospel/.
Ruegsegger, Gregory N., and Frank W. Booth. “Health benefits of exercise.” Cold Spring Harbor perspectives in medicine 8.7 (2018): a029694.
Mikkelsen, Kathleen, et al. “Exercise and mental health.” Maturitas 106 (2017): 48-56.
Kleinman, Arthur. Illness Narratives: Suffering, Healing, and the Human Condition. BASIC Books, 2020.
“National Coffee Association.” NCA, www.ncausa.org/Newsroom/NCA-releases-Atlas-of-American-Coffee.
Lohr, Kathy. “Controversy Swirls around Harsh Anti-Obesity Ads.” KERA News, 24 Aug. 2020, www.keranews.org/2012-01-09/controversy-swirls-around-harsh-anti-obesity-ads.
Zola, Irving Kenneth. “Medicine as an Institution of Social Control.” Ekistics, vol. 41, no. 245, 1976, pp. 210–14. JSTOR, http://www.jstor.org/stable/43618673. Accessed 20 Mar. 2023.
“Official Site of the National Football League.” NFL.com, www.nfl.com/causes/play60/.
“Changing Lives for Good.” Virgin Pulse, 2 Dec. 2022, www.virginpulse.com/.
Barlyn, Suzanne. “Strap on the Fitbit: John Hancock to Sell Only Interactive Life Insurance.” Reuters, Thomson Reuters, 19 Sept. 2018, www.reuters.com/article/us-manulife-financi-john-hancock-lifeins-idUSKCN1LZ1WL.
“How to Start an Activity Competition with a Friend in Watchos 5.” MacRumors, www.macrumors.com/how-to/start-an-activity-competition-in-watches-5//.
Goggins, David. Can’t Hurt Me: Master Your Mind and Defy the Odds. Lioncrest Publishing, 2020.
Winant, Gabriel. “A Radical Critique of Wellness Culture.” The New Republic, 23 Mar. 2023, newrepublic.com/article/148296/barbara-Ehrenreich-radical-critique-wellness-culture.

Medicalization in Female Reproductive Care

Female reproductive care is both familiar and extremely foreign to many women. Talking about menstruation and other biologically female processes that concern the female reproductive system is often considered taboo. While this stigma may seem harmless, it can greatly restrict patient comfort and autonomy by allowing increased medicalization of the female body when women seek treatment for reproductive issues. In many instances, medicalization causes dismissal of female pain and exclusion of the woman from her own treatment plan. Under-medicalization refuses recognition of her pain and thus denies medical remedies, placing the blame on the woman. However, over-medicalization can also reject a woman’s autonomy over her own body, giving doctors jurisdiction because of the taboo subject area (Zola, 2012). Medical control over a woman’s reproductive organs normalizes the dismissal of female-reported pain and a lack of patient-doctor communication due to the taboo nature of the subject.

A Personal Story

(Note: I changed the name of the woman here because the story is personal and I wanted to preserve her privacy.)

Last year, Stacy experienced the impacts of medicalization when she sought care here in South Bend. At midnight, Stacy went to the ER experiencing extreme pain in her lower abdomen. The ER was empty, and she was the only person in the waiting room. Her pain was so extreme that she could not walk. However, Stacy waited over an hour before a healthcare professional was able to see her. Once she was able to be seen by the doctor on call, she was shamed for her potential promiscuity.

“Doctors asked me over and over again if I was pregnant. When I said no, they would ask, ‘Are you sure?'”
Stacy on her experiences seeking treatment for lower abdominal pain at Beacon Memorial Hospital in South Bend

She rated her pain an 8 on a scale of 1 to 10 and yet doctors continually dismissed her pain. As a college-age woman of color, her self-reported pain was not deemed significant enough to warrant urgency. She was left alone in her hospital room for six hours, and doctors ran no tests besides bloodwork, despite her intense physical pain. When they ran urine tests, Stacy asked for water and was denied with no explanation. She eventually was given two ultrasounds and sent back to the room to wait.

At roughly 6:30 AM, several doctors and healthcare professionals came rushing into the hospital room to give her an IV with morphine. They told Stacy that her pain was coming from ovarian torsion and that she might lose an ovary. They said that she may need surgery, and that the doctor would be in at around 4 PM to perform it. When the doctor finally arrived, she told Stacy that surgery was not needed, and doctors discharged her. The medical situation was never explained to Stacy, who went back to campus; she was simply sent home with 8 oxycodone pills and a bill for $6400 in hospital fees, although she never received care.

Reading Stacy’s story in conjunction with texts from this module of the course reveals three major themes for women as they experience healthcare: the dismissal of female pain, moral judgements surrounding healthcare, and the refusal of female agency. These themes represent an over-stepping of the medical field and provide concrete examples of medicalization in the real world.

Dismissal of Female Pain

When Stacy first arrived at the hospital, her pain was dismissed by doctors, possibly due to her age, race, or gender. This is not an uncommon experience for women, especially women of color like Stacy.

One in five women say they have felt that a health care provider has ignored or dismissed their symptoms.
Emily Paulsen, Duke University Healthcare

The refusal to accept and treat female pain can be viewed as an under-medicalization. One of the four ways that Zola reports medicalization occurring is “through the retention of absolute control over certain technical spheres” (Zola, 2012). Through this logic, isn’t the refusal to take control by treating pain an example of under-medicalization? When doctors deny that a woman’s pain exists, they are not only denying her treatment—they also characterize her as an unreliable narrator, stripping her of the psychological agency to report her own pain.

Moral Blame

Because doctors and medical professionals deny women the psychological credibility to be perceived as rational actors over their own bodies, women are often refused agency in their treatment plans. As seen in Stacy’s story, the doctors who treated her assumed that the pain she reported reflected some sort of mistake on her part. Had she practiced unprotected sex? Was she having sex? This moral judgement relates to the discussion in Zola where our society’s perception of illness inherently places blame on the patient (Zola, 2012).

Denial of Agency

Ranging from period taboo to difficulties with fertility, many women are shamed for talking about reproductive health. This relegates female reproductive health to the medical sphere, placing it solely within the doctors’ jurisdiction. When female bodies become the property of the physician rather than the woman herself, an inevitable loss of autonomy occurs. In Stacy’s story, her own pain was not explained to her. Doctors abandoned her to suffer in confusion rather than walk her through treatment options. Even when her diagnosis was finally made, it was not explained. There was never any option for an active involvement in her own treatment. As a young woman of color, Stacy was not given the option to communicate with the doctor as she devised Stacy’s treatment plan. Depersonalization transformed Stacy from an agent to a body in the eyes of the medical field. Dehumanization does not just work in the medical field—systematic racism impacts everything from housing to food access through policies like segregation and redlined (Bailey et al 2021). Women of color lose agency in the medical field because of power hierarchies that have been in place for hundreds of years and still function today.

Cost of Care

In Stacy’s story, she was charged $6400 and ended up paying approximately $1800 out of pocket, although she ultimately received no treatment but pain medicine (which was not regulated). In fact, she was denied water when she asked for it. How can doctors justify that charge? Profit-driven hospitals use medicalization to decrease quality of care and increase margins of profit (Rosenthal 2013). Stacy experienced how medicalization can create high charges and worse care firsthand.

Sources

Bailey, Z. D., Feldman, J. M., & Bassett, M. T. (2021). How structural racism works — racist policies as a root cause of U.S. racial health inequities. New England Journal of Medicine, 384(8), 768–773. https://doi.org/10.1056/nejmms2025396

Paulsen, E., & Paulsen, E. (n.d.). Recognizing, addressing unintended gender bias in patient care. Duke Health Referring Physicians. Retrieved February 24, 2023, from https://physicians.dukehealth.org/articles/recognizing-addressing-unintended-gender-bias-patient-care

Rosenthal, E. (2014, April 18). Paying till it hurts. The New York Times. Retrieved February 24, 2023, from https://www.nytimes.com/interactive/2014/health/paying-till-it-hurts.html

Zola, I. K. (1972). Medicine as an institution of Social Control. The Sociological Review, 20(4), 487–504. https://doi.org/10.1111/j.1467-954x.1972.tb00220.x