The Medicalization Debate

The healthcare field has been one of the fasted growing industries across the globe in recent decades as researchers and medical professionals continue to search for new and improved forms of care. Advancements in new technology, drugs, and our understanding of various health-related conditions are constantly being made and shaping our perception of the world we live in. As Robert Crawford points out in his publication Health as a Meaningful Social Practice, medical policies, forms of treatment, and the way in which we understand different medical conditions influences how we perceive ourselves within the social sphere of society (Crawford, 2006). This relationship between healthcare and social practices becomes especially important when discussing the concept of medicalization. Medicalization refers to the process in which non-medical problems become redefined within the scope of medicine and are treated as such, according to Peter Conrad from Brandeis University (Conrad, 1992). Medicalization has become a point of focus recently as improper identification of an issue as being medical-related could have harmful effects on both patients and society as a whole. Researcher Erik Parens points out that medicalization itself is not necessarily a bad thing, but rather it becomes an issue when the medicine oversteps its limitations (Parens, 2013).

Emilia Kaczmarek describes four major risks that may arise in the case of over-medicalization. First, over-medicalization may have a negative impact on patient health as it promotes excessive treatment that could lead to undesirable side effects. Next, over-medicalization has an effect on the economy as it can promote the misplacement of both public and private funds. Third, over-medicalization can have important psychological implications by stigmatizing certain individuals or their “condition” as being sick and restrict personal freedom through pressures to alter one’s behavior to the standards of society. Finally, over-medicalization overlooks the different social, political, and interpersonal relationships that may play a role in the problem a person is facing (Kaczmarek, 2018). Excessive medicalization can be seen in a number of different examples, such as ADHD, women and childbirth, menopause, erectile dysfunction, sleep disorders, and much more. In each of these cases, the condition is viewed through a biological lens that causes other contributing factors to be overlooked and an emphasis to be placed on medications and other medical treatments. This reading will be focusing on the influence medicalization has had on ADHD specifically and the impact this has had on the most vulnerable patient population: children.

A Snapshot of ADHD in the U.S.

The Center for Disease Control and Prevention describes ADHD as a neurodevelopmental disorder that is commonly diagnosed during childhood and persists through adulthood (Center for Disease Control and Prevention [CDC], 2022). The condition is typically associated with an inability to pay attention, difficulty controlling impulsive behaviors, and being excessively active. In the U.S., it is estimated that around 6 million children are currently diagnosed with ADHD with over 265,000 of these diagnoses occurring in children between the ages of three and five (CDC, 2022). Of this patient population, 62% were consistently taking ADHD medication while 47% were receiving behavioral treatment for a combined 77% of children with ADHD taking some form of treatment. Behavioral treatment for ADHD does not have an impact on the core symptoms experienced by these patients, but rather it involves teaching children various coping strategies in order to control their symptoms. Behavioral therapy is comprised of two main components in order to help children manage the various symptoms of ADHD. The first is what is known as “parent training” that focuses on teaching children how to control their impulsive behavior. This portion of therapy involves both the children and their parents and provides parents with different strategies in dealing with their child’s behavior. The second form of behavioral therapy deals with what is known as “executive functions.” These executive functions are a set of skills that enable a child with ADHD to better manage their time, stay organized, and plan different tasks (Miller, 2022).

Although, nearly half of all diagnosed children are involved in ADHD behavioral therapy, treatment in the form of medication is much more common and also more relevant to the topic of medicalization. ADHD medication primarily involves stimulants such as methylphenidate or amphetamine. These stimulants, which include well-known brand-name drugs like Adderall and Concerta, are the most commonly used ADHD medications and are often varied by dosage depending on the patient’s needs. In general, long-term use of stimulants can have adverse health effects, primarily on the cardiovascular system, as it can lead to chronic high blood pressure, increased heart rate, and heart failure (Losch, 2023). As a result, concern has grown regarding prescribing ADHD medication to children, especially since some may begin taking these drugs as young as three years old.

Only a small fraction of children with ADHD have outwardly hyperactive symptoms.

ADDitude Magazine

The Medicalization of ADHD and the Risks it Poses to Children

With nearly 1 in 11 children in the U.S. currently having an ADHD diagnosis and this rate of instance steadily increasing since 1997, it calls into question the reason for this growing prevalence (Lanham, 2023; CDC, 2022). Are more people in the U.S. being affected by ADHD, is improved testing allowing for more accurate detection of ADHD, or is our understanding and perceptions of ADHD changing and causing a greater number of people to fall under what society categorizes as ADHD? This is where the topic of medicalization becomes relevant. The over-medicalization of ADHD has the potential to increase the rate of diagnosis in children and, as a result, increase the number of children receiving medicated treatment. It is possible that more people are not actually suffering from ADHD, but rather societal pressures, expectations, and norms are shaping how we view the condition. The structure of the U.S. education system requires students to sit at their desk for prolonged periods of time and often does not involve a lot of physical movement. When a kid fails to adhere to expectations that they remain attentive and non-disruptive for these prolonged periods of time, the first assumption may be that they are suffering from ADHD since an inability to focus and control impulsive behavior is associated with this condition. In today’s world, there is a much greater public awareness of ADHD that has caused it to become de-stigmatized, which could explain the growing numbers of cases. The inability of children to focus in a classroom setting may have previously been thought to be related more to the energetic nature of children, but increased public awareness has created an over-emphasis on the correlation between ADHD and hyperactivity in children, leading to far more diagnoses.

The reason that the changing perception of ADHD in society, leading to more supposed cases, is important again comes down to the emphasis on using of ADHD medication to treat the disorder. The nature of stimulants, like ADHD medications, can create a number of different side effects in those taking them. ADHD medications have been known to cause sleep problems, decreased appetite, delayed growth, frequent headaches and stomachaches, irritability as the drug wears off, tics, and changes in mood (Boorady, 2022). This has caused great concern in prescribing children these medications as they are undergoing significant neurological, hormonal, and physical development and the long-term impact these effects can have on this development are mostly unknown as most studies often involve non-human subjects due to the many ethical concerns of experimenting on humans (Volkow, 2008). The fact that the experience and severity of ADHD often varies among individuals can lead to an increase in the number of patients being diagnosed with and receiving treatment for ADHD as well. According to a study published in the National Library of Medicine, there is not a single pathophysiological entity that causes ADHD, but rather multiple risk factors work together to promote the condition we know as ADHD (Curatolo, 2010). This creates the potential for a number of different neurological conditions and features to be classified as having ADHD implications when they may not necessarily cause ADHD themselves and, therefore, more children may qualify for an ADHD diagnosis. This prevents the development of a biologically based test for diagnosing children and instead diagnosis relies on the clinician’s perception of the child’s behavior and parent description.

Conclusion

The over-medicalization of various disorders and conditions has major implications on patient health and overall quality of life. Viewing these disorders with an emphasis on their biological and medical applications opposed to a more comprehensive understanding of the different factors that may contribute to them may negatively affect the patients living with these problems. This becomes more relevant for disorders that are typically diagnosed in children as there could be many long-term effects that have the potential to adversely affect the patient later in life. ADHD is one of these conditions that generates a great deal of concern, especially since the main form of treatment for ADHD in children is prescription drugs. The over-medicalization of ADHD has the potential to increase incidence of diagnoses, and result in a greater number of children taking these prescriptions. ADHD, like many other overly medicalized conditions, lacks a strong biological basis where biological markers can be used to make a diagnosis. Instead, clinicians rely on observed behavior of the patient and descriptions from parents to make the decision of whether or not the child should be treated with a strong chemical compound. Understanding the role that medicalization has on our perception of conditions like ADHD and how this can influence our decisions is key in being able to prevent excessive treatment in vulnerable patients that may not necessarily require treatment.

Works Cited

Behavioral treatments for kids with ADHD. Child Mind Institute. (2023, January 25). Retrieved March 28, 2023, from https://childmind.org/article/behavioral-treatments-kids-adhd/

Carpiano, R. M. (2001). Passive medicalization: The case of Viagra and erectile dysfunction. Sociological Spectrum, 21(3), 441–450. https://doi.org/10.1080/027321701300202082

Centers for Disease Control and Prevention. (2022, August 9). ADHD throughout the years. Centers for Disease Control and Prevention. Retrieved March 28, 2023, from https://www.cdc.gov/ncbddd/adhd/timeline.html

Centers for Disease Control and Prevention. (2022, August 9). Data and statistics about ADHD. Centers for Disease Control and Prevention. Retrieved March 28, 2023, from https://www.cdc.gov/ncbddd/adhd/data.html

Centers for Disease Control and Prevention. (2022, August 9). What is ADHD? Centers for Disease Control and Prevention. Retrieved March 28, 2023, from https://www.cdc.gov/ncbddd/adhd/facts.html#:~:text=ADHD%20is%20one%20of%20the,)%2C%20or%20be%20overly%20active.

Conrad, P. (1992). Medicalization and Social Control. Annual Review of Sociology, 18(1), 209–232. https://doi.org/10.1146/annurev.so.18.080192.001233

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. https://doi.org/10.1177/1363459306067310

Curatolo, P., D’Agati, E., & Moavero, R. (2010). The neurobiological basis of ADHD. Italian Journal of Pediatrics, 36(1), 79. https://doi.org/10.1186/1824-7288-36-79

General prevalence of ADHD. CHADD. (2022, October 20). Retrieved March 28, 2023, from https://chadd.org/about-adhd/general-prevalence/#:~:text=5.1%20million%20children%20(8.8%25%20or,%E2%80%9317%20(1%20in%2010)

Is there an increase in ADHD? CHADD. (2019, July 11). Retrieved March 28, 2023, from https://chadd.org/adhd-weekly/is-there-an-increase-in-adhd/#:~:text=Greater%20public%20and%20professional%20awareness,and%20getting%20treatment%20for%20children.

Kaczmarek, E. (2018). How to distinguish medicalization from over-medicalization? Medicine, Health Care and Philosophy, 22(1), 119–128. https://doi.org/10.1007/s11019-018-9850-1

Mayo Foundation for Medical Education and Research. (2023, January 25). Adult attention-deficit/hyperactivity disorder (ADHD). Mayo Clinic. Retrieved March 28, 2023, from https://www.mayoclinic.org/diseases-conditions/adult-adhd/diagnosis-treatment/drc-20350883#:~:text=and%20certain%20medications-,Treatment,they%20don’t%20cure%20it.

PARENS, E. R. I. K. (2011). On good and bad forms of medicalization. Bioethics, 27(1), 28–35. https://doi.org/10.1111/j.1467-8519.2011.01885.x

Side effects of ADHD medication. Child Mind Institute. (2023, January 25). Retrieved March 28, 2023, from https://childmind.org/article/side-effects-of-adhd-medication/

Staff, P. R. C. (2022, June 7). The long-term consequences of stimulant use. Pinelands Recovery Center of Medford. Retrieved March 28, 2023, from https://www.pinelandsrecovery.com/the-long-term-consequences-of-stimulant-use/

Volkow, N. D., & Swanson, J. M. (2008). Does childhood treatment of ADHD with stimulant medication affect substance abuse in adulthood? American Journal of Psychiatry, 165(5), 553–555. https://doi.org/10.1176/appi.ajp.2008.08020237

In watching the film How to Survive a Plague and reading Steven Epstein’s piece on AIDS activism and clinical trial reform, it is clear that the fight to provide care and treatment for those suffering from AIDS has been extremely difficult. Both of these also demonstrate the strong linkage between activism for HIV/AIDS research and treatment is strongly linked to identity, as the 1980s AIDS movement became led by affected individuals that often identified with the gay community. Because AIDS became associated with things like sex and drugs, AIDS became heavily stigmatized and the connection between identity and illness became problematic.   The AIDS movement revealed many systemic issues in the way research is conducted and how those with stigmatized conditions are treated by the medical community and society as a whole (Epstein).  The HIV/AIDS epidemic has been a public health issue for several decades, and though great strides have been made in developing drugs to treat AIDS, there is no cure and an effective vaccine has yet to be developed.   Why has vaccine and drug development for HIV/AIDS been such a long and challenging process? Once available, how will stigmatization and bias toward HIV/AIDS impact vaccination efforts? 

Overview on HIV and AIDS

Since first identified in the US during the 1980s, human immunodeficiency virus (HIV) has remained a public health concern and affects millions of people across the globe.  HIV is a virus that causes flu-like symptoms in the acute stages.  However, if left untreated HIV weakens a person’s immune system such that the infected person develops AIDS (acquired immunodeficiency syndrome).  Once a person progresses to AIDS, they typically only live for a few years, and are at serious risk for contracting opportunistic pathogens that cause fatal infections in a person with AIDS (“Symptoms of HIV and AIDS: What to Look For?”).  HIV is transmitted through contact with bodily fluids and men who have sex with other men, particularly black men, are most affected by HIV, but anyone can contract HIV if exposed (Levine).  

Challenges to Treatment

HIV’s association with and increased incidence in the gay and bisexual communities complicates treatment.  Homophobia has historically played a large role in creating HIV stigma and continues to play a role today. During the AIDS movement of the 1980s many, including government and church officials, judged those with HIV and AIDS, believing that sexual behaviors that contributed to spread the virus were immoral (How to Survive a Plague).  Homophobia prevents many from getting tested for HIV, has caused resistance to pre-exposure prophylaxis, a newer preventative medication for HIV and AIDS, and inhibits safe sex education efforts.  Gay and bisexual men often experience discrimination that causes higher rates of suicide, depression, and drug abuse.  Some lose support from their families after coming out to them which can make them economically disadvantaged, inhibiting their access to healthcare (Halkitis).  Though more people are becoming accepting of the gay and bisexual communities remnants of historic discrimination and homophobia are still evident today and affect these communities’ healthcare especially as a group that remains vulnerable for contracting HIV. 

The difficulty in treating HIV is also due to the biology of this disease.  Unlike other infectious diseases like COVID19 and influenza which are RNA viruses, HIV is a DNA based retrovirus that is less easily targeted by mRNA vaccines.  Specifically, HIV latency phase can prevent HIV from being easily detected.  An HIV positive individual can live for over a decade with latent HIV infection where the virus exists in the body at very low levels (Cure – Science of HIV).  They are still able to transmit HIV with a detectable viral load, but proper medication with antiretroviral therapies (ARTs) can allow a person to have an undetectable viral load that prevents the person from experiencing symptoms or being able to transmit the disease.  However, as a retrovirus, HIV integrates into the infected person’s DNA, so ARTs can prevent replication of HIV, but cannot eradicate HIV DNA from the host.  Thus, those at risk for contracting HIV must be regularly tested and positive individuals must monitor viral loads to understand their risk for developing AIDS and whether they can transmit the virus to others.  With respect to vaccine development, typical antibody neutralization of HIV is challenged by the virus’ ability to evolve and mutate rapidly to evade antibody mediated neutralization.  

As of now, there is no cure for HIV/AIDS.  Antiretroviral therapy (ART) is the most effective strategy to date for HIV management.  Since the start of the HIV/AIDS epidemic, nearly 24 different pharmacological agents have been approved for treating HIV and work by preventing viral replication.  In addition to ART, pre-exposure prophylaxis (PrEP) was approved in 2012 and is highly effective at preventing HIV infection.  Current work is aimed at developing a vaccine for HIV especially as mRNA vaccines have shown great promise for the COVID19 pandemic.  Moderna and the National Institute of Allergy and Infectious Diseases are currently testing mRNA based HIV vaccines in phase 1 trials.  Though initial data from these trials, an additional 5-10 years of trials must be conducted before these vaccines can become widely available (Vesper).   

Enacting an Effective Vaccination Campaign

Beyond overcoming biological challenges in developing an effective vaccine, combating systemic issues and likely opposition to HIV vaccination will be a major concern in disseminating the vaccine to the population.  First, HIV stigma, homophobia, and embarrassment  may prevent people from wanting to get vaccinated.  Many might think vaccination is not necessary for them because it is only common in the gay and bisexual communities, and if they do not identify with those communities they might be reluctant to get vaccinated.  Advocates for improved HIV/AIDS treatment development efforts suggest investing in community engagement and behavioral science to increase reception to vaccination.  With more people receptive to receiving vaccination the social risk a person takes in getting vaccinated decreases.  The COVID19 vaccination effort was wildly successful because public health officials and epidemiologists were able to generate excitement around getting vaccinated and brought millions of vaccines to people in a coordinated effort.  To obtain similar success with HIV vaccination, significant work would need to be done in educating the public about the benefits of vaccination and reducing stigma and perceived social risk surrounding vaccination.  In addition, ensuring that the public has access to vaccination is critical to ensuring success of an HIV vaccination campaign.  This could be accomplished by creating a public vaccination program for an HIV vaccine or by expanding insurance plans to cover an HIV vaccine.  A lack of a federal vaccination program would present challenges in ensuring vaccines reach uninsured people, especially as many at risk for HIV may not have strong health insurance.  A final consideration in bringing vaccination to the public is overcoming vaccine hesitancy.  A significant number of Americans have become wary of vaccines such that the WHO has identified hesitancy to vaccinate as a top ten global health threat.  Even if researchers and vaccine developers can overcome scientific barriers in developing an HIV vaccine, combating systemic issues and societal reluctance to vaccinate will be an equally challenging factor in the vaccine’s success (Bose).  

Levine, Hallie. “6 Surprising Things You May Not Know About HIV/AIDS Today.” Content Lab U.S., 15 Mar. 2023, www.jnj.com/innovation/6-surprising-things-you-may-not-know-about-hiv-aids-today.

Conclusions 

Currently 1.2 million people in the United States have HIV and over 18,000 people died of HIV in 2020 alone (“HIV And AIDS Trends and U.S. Statistics Overview”).  The battle for effective therapies for HIV/AIDS has been ongoing for decades, and without better therapies, people will continue to suffer from this disease especially as climate change will increase opportunistic pathogens that contribute to deaths in the coming years.  As vaccination is one of the most effective ways to prevent death for most diseases, an HIV vaccine would significantly improve the status of HIV positive individuals (Ten Threats to Global Health in 2019).  

However, just developing the vaccine is not enough, and strategizing ways to vaccinate the public will be critical in the vaccine’s success.  With the existence of vaccine hesitancy among Americans, public health officials must properly educate Americans on HIV and the efficacy of the future vaccine.  Additional work must be done to de-stigmatize HIV/AIDS to increase reception to an HIV vaccine and increase the number of vaccinated individuals.  Education is incredibly powerful in helping Americans understand the severity and complexity of this epidemic.  In anticipation of a vaccine, advocates must continue the momentum begun in the 1980s in support of HIV/AIDS treatment and care.  

References:

Arts, Eric J., and Daria J. Hazuda. “HIV-1 Antiretroviral Drug Therapy.” Cold Spring Harbor Perspectives in Medicine, vol. 2, no. 4, Cold Spring Harbor Laboratory Press, Apr. 2012, p. a007161. https://doi.org/10.1101/cshperspect.a007161.

Bose, Devi Leena. “Preparing Society for a HIV Vaccine.” Nature India, Nature Portfolio, May 2022, https://doi.org/10.1038/d44151-022-00050-4.

Casadevall, Arturo. “Climate Change Brings the Specter of New Infectious Diseases.” Journal of Clinical Investigation, vol. 130, no. 2, American Society for Clinical Investigation, Feb. 2020, pp. 553–55. https://doi.org/10.1172/jci135003.

Cure – Science of HIV. scienceofhiv.org/wp/cure/#:~:text=HIV%20is%20so%20difficult%20to,detected%20by%20the%20immune%20system.

Epstein, Steven. “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials.” Science, Technology, & Human Values, vol. 20, no. 4, 1993.

Halkitis, Perry N. “Discrimination and Homophobia Fuel the HIV Epidemic in Gay and Bisexual Men.” https://www.apa.org, www.apa.org/pi/aids/resources/exchange/2012/04/discrimination-homophobia.

“HIV And AIDS Trends and U.S. Statistics Overview.” HIV.gov, www.hiv.gov/hiv-basics/overview/data-and-trends/statistics.

How to Survive a Plague. Directed by David France, Public Square Films, 2009.

Levine, Hallie. “6 Surprising Things You May Not Know About HIV/AIDS Today.” Content Lab U.S., 15 Mar. 2023, www.jnj.com/innovation/6-surprising-things-you-may-not-know-about-hiv-aids-today.

“Symptoms of HIV and AIDS: What to Look For?” HIV.gov, www.hiv.gov/hiv-basics/overview/about-hiv-and-aids/symptoms-of-hiv.

Ten Threats to Global Health in 2019. www.who.int/news-room/spotlight/ten-threats-to-global-health-in-2019.

Vesper, Inga. “Cautious Optimism for Trials of mRNA-based HIV Vaccine.” SciDev.Net, 30 Mar. 2022, www.scidev.net/global/features/cautious-optimism-for-trials-of-mrna-based-hiv-vaccine.

Introduction

For many college students, they are away from home for an extended period for the first time in their lives. Used to having their medical problems taken care of by their parents, this complicates seeking care for sicknesses at school. Many schools offer some form of a clinic on-campus, but these are commonly reported to be insufficient to take proper care of what students need. For many female students, especially those seeking reproductive care, it is difficult to seek care for an issue commonly characterized as taboo. As reported in class, women are more likely to see medical care, especially regarding to reproductive issues. At Notre Dame, issues like these become even more complicated as certain medical procedures are restricted due to the dominant Catholic views of the school. Seeking medical care alone as a young woman exposes patients to stigma and shame, allows women to feel ignored in their own experiences with their bodies, and reveals the impact that illness can have on overall lifestyle.

Personal Encounter with UHS

_{Note: I have changed the name of my friend who agreed to let me use this story for class to preserve her privacy.}

My friend, Janie, experienced chronic urinary tract infections (UTIs) while at school at Notre Dame from an unknown cause. When she visited University Health Services (UHS) and her gynecologist at home, she experienced extreme judgement and stigma. The first thing her gynecologist asked her was whether she had a boyfriend (not her number of sexual partners, but whether she had a boyfriend) and when she said yes, they noted that in her chart as a piece of medical information. At her follow up appointments, her gynecologist asked about her boyfriend specifically, inquiring whether he was from home or school, how long they had been together, and other personal pieces of information.

Her gynecologist and UHS were ultimately unable to identify the root causes of what they diagnosed as chronic UTIs. Janie suffered four UTIs in four months as doctors from her hometown and Notre Dame refused to acknowledge that a bigger issue might be at play. They accused her of sleeping around and STDs contributing to her pain while refusing to give her antibiotics that would alleviate her pain or evaluate her for a more serious, long-lasting condition.

They made me feel as though my pain was not worthy of serious consideration, that I must be making it up for attention.

Janie on her experiences with medical professionals at University Health Services in Notre Dame

The condition became drawn out over four months, and it greatly impacted Janie’s quality of life. She was in extreme pain and often had to leave class during lecture due to pain. It eventually got to the point that she was unable to walk back from a class building to her dorm (a 15 minute walk). When she called UHS desperately requesting an appointment and reporting symptoms of kidney stones, the nurse told her that there was nothing she could do to get her an appointment in the next week and remarked, “if you were my daughter and in this much pain, I would send you to the ER.” With no car and nobody to take her to the ER, Janie took 3 Advils and tried to take a nap. She woke up to find herself in some relief (after months of agony) and her gynecologist from home later confirmed that she must have passed the kidney stones unaided by medicine.

Reading Janie’s story alongside the texts from the course reveals three themes from this module. She experiences stigma and judgement about her character from her medical condition, encounters the power dynamics which dictate access to medicine for a college-aged girl by herself, and is confronted with the reality of illness and how it affects life outside of the medical realm.

Stigma in the Medical Sphere

Janie experienced stigma and shame from medical professionals because she was a college-aged woman seeking healthcare by herself for a UTI. There is a medical link between UTIs and sex, as anything that allows bacteria to enter the urinary tract can increase the risk of UTIs. Janie faced extreme judgement for her condition because medical professionals who were supposed to be caring for her often assumed that it was her fault that she was experiencing pain, and she deserved it because of her promiscuity. As discussed in Chapter 10 of Kleinman’s Illness Narratives, stigma often has religious ties, and “the afflicted person is viewed as sinful or evil…or [can be associated with] a moral connotation of weakness and dishonor” (Kleinman, 2020). It’s very likely that Notre Dame’s status as a Catholic University influenced the training that UHS employees get and affects the way that they interact with patients for conditions that may be related to premarital sex. When Janie experienced the medical professionals’ reaction to her health condition, she felt silenced and judged, just as patients in Kleinman’s book reported feeling.

Power Hierarchies Affecting Care

When Janie called and requested an appointment after reporting severe symptoms, UHS repeatedly told her that they were unable to fit her in. One nurse even told her that she would tell her own daughter to “just go to the ER.” And when Janie reported to the UHS nurse on the phone that she was experiencing extreme pain (7-8 out of 10), the nurse seemed skeptical, asking “really? There’s no way.” When she told the professionals that she thought she may have a kidney stone, reporting typical symptoms like proteinuria and radiating pain from her back down her hip, she was shut down and told that it was probably just another UTI. Similarly, Nelson writes that the communities served by the Black Panthers’ free clinics often described experiences where when “the resident…comes in to check up on [you, he]…talks to you as though you weren’t there” (Nelson, 2013). Because the medical professionals at the top of the power hierarchy did not view those communities as worthy of knowledge, the medical information was weaponized as it was withheld. Janie was also not treated as capable of understanding her own body, denied explanations of why doctors would not treat her for kidney stones and why her symptoms did not qualify. Just as the gay community protesting for AIDS treatments found themselves having to prove themselves credible in order to engage in healthcare discussions over their own care, Janie did not seem intelligent or credible enough as a young woman to be granted agency in her own care (Epstein 2020).

Impact of Illness on Lifestyle

When Janie was chronically ill for four months, her illness affected more than just her physical health. It impacted her academics, mental health, and relationships with her friends and partner. In Chapter One of Illness Narratives, Kleinman acknowledges the far-reaching impacts of “illness,” defining it as “how the sick person and the members of the…social network perceive, live with, and respond to symptoms and disability” (Kleinman, 2020). Because she was in such severe pain and was denied medication, she had to leave class during lecture for long periods of time and fell behind on schoolwork. She was also unable to exercise, affecting her mental health. Kleinman details the effect of chronic illness on Alice Alcott, who experiences emotional reactions to her medical condition that affect the rest of her life. He explains that the work of the healer is also to deal with emotional consequences that may come from conditions and treatments (Kleinman, 2020). When Janie’s doctor refused to address her feelings of pain or her concern that it may be a more serious cause, she neglected this duty.

Sources

Epstein, S. (1995). The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology, & Human Values, 20(4), 408–437. https://doi.org/10.1177/016224399502000402

Kleinman, A. (2020). The meaning of symptoms and disorders. In The illness narratives: Suffering, healing, and the human condition (pp. 3–30). essay, Basic Books.

Kleinman, A. (2020). The personal and social meanings of illness. In The illness narratives: Suffering, healing, and the human condition (pp. 31–56). essay, Basic Books.

Kleinman, A. (2020). The Stigma and Shame of Illness. In The illness narratives: Suffering, healing, and the human condition (pp. 169–180). essay, Basic Books.

Nelson, A. (2013). The People’s Free Medical Clinic. In Body and soul: The black panther party and the fight against medical discrimination (pp. 75–114). essay, University of Minnesota Press.

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.

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

1. 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. 
2. France, David, director. 2012. How to Survive a Plague. Sundance Selects. 109 min.
3. GOFFMAN, ERVING. Stigma: Notes on the Management of Spoiled Identity. PENGUIN BOOKS, 2022.
4. Kleinman, Arthur. “The Illness Narratives.” Academic Medicine, vol. 92, no. 10, 2017, p. 1406., https://doi.org/10.1097/acm.0000000000001864. 
5. 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. 

Calving Ridley is an All-Pro wide receiver in the NFL. However, his prosperous young career was disrupted this past season when he was banned from the NFL for gambling on his own team, the Atlanta Falcons, to win. He made a mistake and he owns up to it. However, just recently he shared his personal story which provides a lot more insight into what he was going through at the time. In diving deeper into his career and experiences, he highlights a handful of ways in which the culture of health and medicine within the NFL had failed him and led him down an extremely dark path. A team trainer contested and ignored Ridley’s broken foot. Then, Ridley reflects on his personal experience surrounding the passive medicalization of painkillers in the NFL. Finally, we see a more complete picture as Ridley expands upon the social impacts and stigmas around mental health as an athlete.

“Nah, bro, this is different. My shit broke.”

Calvin Ridley on pain in his foot to teammate Julio Jones⁵

Contesting Broken Bones

Ridley begins his story talking about his early career in the NFL. During his first two years, he played through bone spurs with the help of painkillers. He was performing at an extremely high level despite the pain. Then came the 2020 season, and after a Week 8 game against Carolina, Ridley’s pain level was at an all-time high. Feeling that there was something seriously wrong, he went to the team trainer and got an MRI. The trainer said it was just a bone bruise. Feeling that this was an injury and pain that he could manage, Ridley finished out the season posting career high numbers in receiving yards and touchdowns. However, his team was not performing as well and finished the season 4-12 resulting in a complete staff overhaul. When the new trainer came in, Ridley was sent to a specialist who within the first hour of the examination admitted to Ridley, “Your foot is definitely broken.”⁵

Broken bones are usually not a contested illness or condition, but in this case it was. While each scenario exemplifies key differences, Calvin Ridley’s injury reflects a lot of similarities to others who deal with contested illnesses. One example of such a condition includes Chronic Fatigue Syndrome. Patients experience incapacitating physical and mental fatigue, but due to the abstract nature and complexity of symptoms and indicators, this condition has historically been highly contested.⁶ Just like Ridley, these patients know there is something more serious going on even though doctors assure them that they are fine. This often leads to false diagnoses along with excessive, unnecessary, and often ineffective treatments. 

“I’m a football player. I know what we get paid for, you feel me?”

Calvin Ridley on taking Toreador shots every Sunday⁵

Passive Medicalization of Toradol in the NFL

In Ridley’s case, he was experiencing a ton of pain but persisted on playing through his “bone bruise.” In order to accomplish this goal, he took Toradol every Sunday to ensure that he could play with minimal pain and continue to perform at a high level. Now, Toradol is a drug, often injected, used for quick-acting pain relief. However, it is not supposed to be taken frequently due to high risk of side effects.³ Nevertheless, it was allowed and normalized because of the culture of the NFL and the expectations of its athletes. 

There are several parallels between the use of Toradol and the passive medicalization of Viagra. Similar to the societal expectations we place on athletes, the culture norms of masculinity contribute to the negative feelings that emanate from erectile dysfunction.¹ Social factors such as insecurity stigmas around men’s health explain the high demand of Viagra. Men will often opt to take the pill for the quick fix rather than feeling the embarrassment of actually addressing the root causes of their ED. Thus, Viagra users eliminate the possibility of seeking counseling or any other solutions that would more effectively help and potentially solve their condition long term.

“My daughter don’t care. She’s two years old, and she’s running straight up to me, “Dadddyyyyyy!!!” She’s wanting to bake some cookies in the Fisher-Price oven, you know? But I’m coming home broken. I can’t even do anything but lie around in a dark room.”

Calvin Ridley on mental health issues off the field⁵

Social Impacts and Stigma around Mental Health as an Athlete

As Arthur Kleinman highlights, it is often not until detailed context of a lengthy case is revealed that we can come to fully understand and experience the social meaning and impact of illness.² As Ridley continued with his struggles with injury, he explains that “after practice, once that painkiller wears off, you still have to come home and be a husband and a father.”⁵ The social structure of a patient’s life is an integral part of their inner experience and is an aspect of healthcare that is important and necessary but is often ignored. In Ridley’s case, he had a daughter, a wife, teammates, coaches, and even a whole city that were counting on him in one way or another, and the last thing he wanted to do was let anybody down. 

However, the pressure of these expectations compounded with his injury struggles is where the anxiety began. Ridley knew something was off but could not let anybody down, so he just stuck to pills, shots, and gritting it out. This really speaks to the stigma around men’s health, specifically the male athlete.4 There is often a feeling of expectation that men should deal with their problems on their own, and athletes especially are taught to just tough it out. Eventually, Ridley realized that his mental health issues were getting to be too much, and he decided to step away from football to seek help. Even then, there were people in the building that were supportive, Ridley recalls other people looking at him like, “You good, bro.”

Depression, Shame, and Recovery

Ridley recalls his time away from the game as major low in his life. He was extremely depressed, did not know what to do or where to go, and was just trying to get through each day. He hit rock bottom when the gambling scandal became public.

“Whenever people ask, ‘What were you thinking?’ The only answer I can give is, ‘I wasn’t.'” 

Calvin Ridley on responding to criticism relating to his gambling scandal⁵

Ridley eventually sought real help and contacted a therapist. He finally was able to learn more about what he was going through as well as how to cope with the emotions he was feeling. Throughout his story he recognizes and owns his mistakes but also reveals more of the background on what led him to that moment. It is not all his fault and much of what occurred can be attributed to a broken system that has much room to grow in how physical and mental health is handled. 

References

¹Carpiano, Richard M. “Passive Medicalization: The Case of Viagra and Erectile Dysfunction.” Sociological Spectrum, vol. 21, no. 3, 2001, pp. 441–450., https://doi.org/10.1080/027321701300202082. 

²Kleinman, Arthur. “The Illness Narratives: Suffering, Healing, and the Human Condition.” Academic Medicine, vol. 92, no. 10, 2017, p. 1406., https://doi.org/10.1097/acm.0000000000001864. 

³Murdock, Joshua. “Toradol (Ketorolac): Pros and Cons of This NSAID Pain Reliever – Goodrx.” GoodRx Health, 7 Oct. 2021, https://www.goodrx.com/ketorolac/what-is-toradol-ketorolac-nsaid-pain-reliever. 

⁴“Official Website of the Atlanta Falcons Football Club.” Falcons Home, https://www.atlantafalcons.com/. 

⁵Ridley, Calvin. “A Letter to the Game: By Calvin Ridley.” The Players’ Tribune, The Players’ Tribune, 8 Mar. 2023, https://www.theplayerstribune.com/posts/calvin-ridley-nfl-football-jacksonville-jaguars. 

⁶Walker, Jacob. “Researching Contested Illnesses: The Case of Chronic Fatigue Syndrome (CFS).” In-Training, 28 Feb. 2016, https://in-training.org/researching-contested-illnesses-the-case-of-chronic-fatigue-syndrome-cfs-90. 

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.

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