In her late 60’s, my grandmother began experiencing unexplained shortness of breath, chest pains, and difficulty sleeping. Due to my family’s history of hyperlipidemia (abnormally high levels of lipids in the blood), it was no surprise that she was diagnosed with hypercholesterolemia (abnormally high levels of cholesterol in the blood) upon seeing a cardiologist. Initially, the symptoms were mild since she had been taking statins (cholesterol-lowering medication) but progressed once she stopped the medication. She woke at night, unable to breathe, “feeling like [her] heart was swimming.” After multiple visits and disagreements with the cardiologist, she was referred to a continuous positive airway pressure (CPAP) specialist for suspected severe sleep apnea. When she was diagnosed with mild sleep apnea, her concerns over her cardiac issues were continuously diminished by practitioners. Only after calling emergency services two nights in a row, continually advocating for her health, and presenting as a “difficult patient” was she given a stress test and coronary angiogram. During the angiogram, she was diagnosed with coronary artery disease and angina and scheduled for an emergency coronary artery bypass grafting the following morning. As her diagnosis and treatment unfolded in less than 24 hours, she recounts those moments as some of the worst hours of her life: “It’s like a horror movie, except you’re not watching it, you’re in it, you’re the main star, and you don’t know what’s coming or what’s next.”

The final nail in this health ordeal was an inappropriate comment from the cardiologist during her 2-week post-surgery follow-up: “You look good for someone who’s undergone open-heart surgery.”

My grandmother’s illness experience is just one of many negative healthcare interactions faced by patients of lower socioeconomic status (SES), affecting the quality of care they receive. Moreover, several mistakes were made that affected how quickly she was diagnosed and treated by medical providers. This essay will explore my grandmother’s illness experience at four stages: emergence of symptoms, diagnosis, treatment, and daily life with a chronic disease. Her identity as an elderly woman, a divorcee, and a member of a lower SES plays a crucial role in shaping her cultural health capital, interactions with healthcare providers, the social recognition of her disease, and her current experience living with heart disease.  

Coronary Artery Disease (CAD) progresses over many years as plaque (cholesterol deposits) lines the walls of the arteries leading to the heart, prohibiting blood flow and potentially resulting in cardiac arrest and death if untreated. Indications and factors that may increase the risk of developing CAD are excess stress, an unhealthy diet, and aging, all of which affected my grandmother. However, it is necessary to contextualize these factors within a fundamental causes framework, which highlights the deeper underlying link between social status and health inequity. In conversation with other scholars, Link and Phelan argue that while illness can sometimes influence social conditions, substantial evidence points to social conditions as a cause of various illnesses, shaping disease outcomes through proximal and distal factors (Link and Phelan, 83). Distal factors, which they cite as those indirectly affecting health (e.g., SES and income), and proximal factors, those directly affecting health (e.g., occupational stress and diet), are directly tied into the timeline of CAD progression. Plaque does not line the walls of the arteries overnight, much like having one “bad” meal is not indicative of a poor diet. However, thirty years of maintaining a property, small farm, and small business on a limited income resulted in my grandmother neglecting her diet and making food choices based on affordability rather than health. Despite financial constraints that limited her ability to make beneficial health decisions, governmental resources like Medicare and Medicaid gave her access to routine blood work, which had caught hypercholesterolemia and granted her a referral to a cardiologist for statins, a class of cholesterol medications that can lower cholesterol levels and decrease chances of heart disease (NHS). But herein lied the beginning of many challenges on the road to diagnosing CAD.

Though my grandmother was a businesswoman and has cultural capital (Bourdieu) in  jewelry, gifts, and floral arranging, she lacks cultural health capital (CHC) in the cognitive, attitudinal, and behavioral interactions with healthcare providers. (Shim, 4) This is understandable, given her highest level of education was high school. However, her educational circumstances placed her on the lower rung for healthcare as she could not, as Shim argues, articulate her concerns in a manner beneficial to getting attention and satisfying engagement with healthcare professionals. The interlinkage between her SES and health, caused by many structural inequalities and her CHC, cannot be understated, as it affected the rest of the timeline of her disease progression. Her original cardiologist, who prescribed the statins, retired, and she was now a new patient to another cardiologist at this clinic. Somehow, the prescription was not refilled under this new cardiologist, but she lacked a clear understanding of the medication’s purpose and the CHC to advocate for continued prescription. In recounting why she had been taking statins, she said, “He doesn’t tell you how long to take it for, or what to take it for, just to take it to feel better.” This approach to staying on the medical sidelines is one that Gengler draws is common in families with less CHC.

This pattern of care entrusting, or “turning the wheels over to the healthcare professional to steer the most effective course” (Gengler, 349),  persisted when trying to give a name to her issues. Since many of these symptoms, from neck pain in the middle of the day and lack of sleep to blood pressure surges when awoken from sleep, were irregular and did not present as typical signs of CAD, her concerns were continuously brushed off as non-cardiology issues, and she was referred to a CPAP specialist. CPAP (continuous positive airway pressure) uses air pressure to keep breathing airways open while sleeping; it treats sleep apnea, a condition that causes people to stop breathing while sleeping, and many of the symptoms overlap with CAD. Though the sleep apnea diagnosis led to her receiving a CPAP machine, the absence of a cardiac diagnosis meant a deflection from the root problem. A CAD diagnosis was essential, not only for getting treatment to prevent a heart attack but also to affirm that my grandmother’s illness was not “all inside of her head,” as the CPAP specialist told her. Diagnosis is a powerful tool that allows one to access resources for help and to find community. As Rosenberg (16) states, “Diagnosis labels, defines, and predicts, and, in doing so, helps constitute and legitimate the reality that it discerns.” In this case, diagnosis was like the elusive golden ticket necessary to reach the next level of care; without it, my grandmother was stuck in limbo, ailing as her symptoms worsened but unable to treat the pain.

Though my grandmother lacked the CHC to effectively advocate for herself, her persistence eventually led the original doctor to agree to further testing, resulting in her coronary artery disease diagnosis. However, this came all too late for preventative measures like statins and lifestyle changes to reverse the course of the disease. Despite the availability of advanced tools and knowledgeable practitioners to address my grandmother’s health issues, disorganized care , bureaucratic inefficiencies, and a dismissal of her personal narrative hindered effective interventions. The morning after her diagnosis, my grandmother underwent an emergency coronary artery bypass grafting, an open heart surgery that reroutes blood flow to the heart. While this alleviated the symptoms and pain she felt, she now had to grapple with the outcomes of the treatment and make sense of what it meant to be a person living with a chronic disease. 

Today, more than a  decade later, she is still reeling from the effects of the surgery and disease. Much like Bury states in his “Chronic Illness as Biographical Disruption (1982),” illness forced my grandmother to reevaluate all her plans and expectations. She closed her shop, sold her animals, and became invested in managing her health with an even more limited income. While she now has a new cardiologist and a team of practitioners who actively listen to her concerns, it can not undo the damage and scars left on her body and mind by previous practitioners.

Reflecting on this experience through a sociological lens, I recognize how disparities in SES and CHC deeply affected my grandmother’s care. Despite living in the same city, the stark difference in the treatment of our health concerns underscores health inequity. While I am grateful for the care that ultimately saved her life, I am dismayed by how long it took and how poorly her concerns were addressed.

References

1. Link, Bruce G., and Jo Phelan. 1995. “Social Conditions as Fundamental Causes of Disease.” Journal of Health and Social Behavior 36(Extra Issue): 80–94
2. National Health Service. “Overview – Statins.” NHS, 2022, www.nhs.uk/conditions/statins/.
3. Rosenberg, Charles E. 2007. Our Present Complaint: American Medicine, Then and Now.Chapter 2 (pp. 13–37) “The Tyranny of Diagnosis: Specific Entities and Individual Experience.” The Johns Hopkins University Press
4. Bourdieu, Pierre. 1977. Outline of a Theory of Practice. Cambridge, United Kingdom: Cambridge University Press.
5. Bourdieu, Pierre.  [1980] 1990. The Logic of Practice. Stanford, CA: Stanford University Press.
6. Bourdieu, Pierre. [1983] 1986. The Forms of Capital.” Pp. 241-58 in Handbook of Theory and Research for the Sociology of Education, edited by J. G. Richardson. New York: Greenwood Press. Burgess, Diana J., Michelle van
7. Shim, Janet K. 2010. “Cultural Health Capital: A Theoretical Approach to Understanding Health Care Interactions and the Dynamics of Unequal Treatment.” Journal of Health and Social Behavior 51(1): 1–15.
8. Gengler, Amanda M. 2014. “‘I Want You to Save My Kid!’: Illness Management Strategies, Access, and Inequality at an Elite University Research Hospital.” Journal of Health and Social Behavior 55(3): 342–59
9. Bury, Michael. 1982. “Chronic Illness as Biographical Disruption.” Sociology of Health & Illness 4(2): 167–182