Visible And Invisible CVD: International Social And Cultural Reactions

CVD (cardiovascular disease) is a spectrum of visible and invisivle symtpoms. As CVD is the most common illness and the deadliest in the world, it is not unheard of to have it. Because it is so common, certain stereotypes and expectations follow the illness. This makes sense that these beliefs follow in its shadow. Given the invisible and visible symptoms of CVD and the behavioral changes they invite from those around the individual, the reaction and treatment shift can be startling. However, as someone who has had it for thirty+ years, I can say through experience that there is a noticeable difference in how people have treated me due to my invisible, visible, and simultaneous signs of CVD. Although, regardless of where I am, and the connotations it inspires, there is always a reaction to it. This is because there is a difference in how you’re treated if you “have CVD” vs. how you’re treated when you “show CVD.” There is always a reaction to the illness, but which aspect and how it is received create nuance.

When I refer to “visible symptoms,” I mean the physical signs that are obvious not only to the individual but also to those around them. These classic signs of CVD include scars, slow movements, difficulty breathing, paleness, slurred speech, and tremors, among others. A further, more detailed list detailing the differences between how these present differently in sexes, Cardiovascular Disease in Women: Understanding Symptoms and Risk Factors. With visible signs of CVD, women tend to experience “milder symptoms, sudden onset of weakness, shortness of breath, fatigue, feeling of systemic illness (without chest pain)” (Keteepe-Arachi and Sharma, 2017) and “mild discomfort in back, chest, arm, neck or jaw (without chest pain)” (Keteepe-Arachi and Sharma, 2017). These physical symptoms, regardless of sex, differ from the norm and can be not only a medical signal for CVD, but they can also attract cultural and social attention and responses.

However, invisible symptoms of CVD can be debilitating even if it is less obvious. The article, Coronary Heart Disease - Living With, highlights how “living with heart disease may cause fear, anxiety, depression, and stress” (National heart, Lung and Blood Institute, 2023). Along with weakness, fatigue, and breathlessness that can accompany these symptoms, both invisible and visible symptoms can have a profound impact on the individual’s quality of life, in both professional and social capacities.

Social responses to CVD vary. Like the illness itself, it is a spectrum. On the positive side, sometimes it inspires warm, welcoming care and supportive environments. This is often due to the illness being viewed as a badge of honor and a sign of survival. However, on the negative end, the more intense the symptoms and the more obvious the illness, the more negatively it tends to be socially received due to its inconvenience. Therefore, when this happens, the person is more likely to experience social isolation, lack of social support, discrimination, and adverse socioeconomic conditions. These all unintentionally, but actively increase CVD risk and negatively impact outcomes by affecting physiological responses and increasing the likelihood of anxiety and depression. The article, Social Determinants of Risk and Outcomes for Cardiovascular Disease: A Scientific Statement From the American Heart Association, discusses the numerous social, economic, residential, and environmental factors that contribute to the social impact on CVD. But ultimately comes to the conclusion that, “although there is substantial evidence linking social factors and CVD risk and outcomes, many unanswered questions remain” (Havranek et al., 2015). Given the individualized nature of the illness, patterns do exist, but each person’s social and cultural background, as well as their unique circumstances, are distinct.

However, in my experience, I have noticed this shift in treatment very clearly, regardless of the part of the globe or stage of my career I am in. Whether these signs of CVD are visible or invisible, there has always been a reaction. However, there is a trend veering toward the negative as the signs of invisible illness overshadow the visible.

I have experienced both ends of this spectrum, but it often comes on a timeline where I am first greeted warmly with visible aspects of illness like my short arm and scars being viewed as a sign of strength and survival… but historically, that only lasts as long as I can keep the invisible symptoms under control.   

Personally, my arm is often the first aspect of my visible CVD that people notice. My arm was shortened due to a complication with my first open-heart surgery at a month old, which led to growth plates being damaged. Next, my scars on my chest are often noticed. If they come close enough, people can often hear the ticking of my mechanical heart valves.

However, asthma is an “invisible,” or less obvious, aspect of my CVD that shows up when there is poor air quality and compromises my breathing. Given the interconnected nature of the system, if the lungs are compromised, the mind and body cannot function as efficiently as they should. Oftentimes, the asthma and its severity is assumed to be not only be related to my CVD, but to “be” my CVD. Not only that, since the CVD is permanent and eventually terminal, it is written off as just another aspect of my CVD experience and my deterioration along the way. So it is brushed off or assumed to be “normal” or “expected” from someone like me.

My asthma is connected to my CVD, but it is not actually a full representation of my CVD. It can be corrected if the trigger is removed and proper medicine is taken. However, I find that too often, both my CVD and I are written off as if I am the sum of both of these illnesses and little else. Essentially, despite my expertise and experience, I am often, unfortunately, perceived as a problem waiting to happen and too much of a liability to invest in, simply due to the nature of CVD.

So, oftentimes it is the asthma that is the spark that starts the fire of other health issues. Asthma is the invisible issue that overshadows the visible signs of my CVD. It is a warning sign, a beacon on a mountaintop indicating impending trouble if it is not noticed and remedied soon. But unfortunately, because it is happening to me, and my trained instinct is to power through it and wait it out, I cannot always tell that my asthma is triggered, and my health is compromised. Sometimes I’m the last to know.

Even if I am aware that something feels wrong, it triggers my old habit of trying to power through it in the hope that if I hang on, then it will eventually be remedied and the pain/discomfort will stop. It’s a response I have had since the surgeries as a child.

However, In order to achieve the goals of surviving, becoming an expert in my field, and gaining health insurance, I have needed to move to different regions of the world. Many of them have had poor air quality and/or too high an elevation for my asthma to contend with. But I was sure that I could power through it.

I did, but not without a cost.

In Colorado, China, and Germany, when aspects of my CVD began to show, the social and cultural treatment toward me shifted, and the more obvious invisible symptoms of my illness became more and more visible. This indicated a pattern.

Greeley is known for its air pollution due to its reliance upon both the cattle and oil industries. During my college years, production only increased, and this began to impact my lungs and activate my asthma more and more. But because I did not know the cause of it or my confusion, breathlessness, and lack of ability to concentrate, people assumed it was because I was “not taking care of myself,” as if I had control over it.  

However, early on, when I was earning my Bachelors Degrees in both Anthropology and Asian Studies,  I was given the name “孟宝兰” (Mèngbǎolán), meaning “treasured orchid,” which was a more scholarly title as “Mèng” was the last name of “Mengzi,” a traditional scholar. “lán” or “orchid” is an unconventionally beautiful flower symbolic of knowledge. To be honest, I loved that name, treasured it, and did everything I could to retain it.

This is why it hurt so bad when, as time went on, the air quality became worse and my compromised breathing subtly impacted my cognitive abilities. In hindsight, that was the cause of why I felt like I was suffocating above ground without even knowing it. It impacted me in Greeley, Colorado, but this same issue with asthma followed me when I studied in Xi’an, China.

In Xi’an, a highly polluted and very touristy city, I was unaware of how deeply the poor air quality would affect me, even with my asthma medication. I was walking down the smoggy street with the same professor who had given me that name I loved so much.

Walking up a smoggy street near campus, my lungs were burning. I was coughing, gasping, and wheezing, and struggling to keep up with my professor. Still, I did my best. On that smoggy day, until she turned to me. Yelling, she told me that she wished I hadn’t ever joined her class because I was weak, pathetic, useless, and a waste of her time.

If my heart wasn’t already physically broken, what was left of it shattered in that moment.

This is just one example of the many verbally abusive interactions with that professor, where she used my illness against me for years. But because my invisible symptoms of my illness became more obvious, it was, apparently, in her mind, justified.

Back in the USA, as the air quality in Greeley worsened, my asthma followed in turn. This had an impact on my broader physical and mental health. It should be noted that it was a slow, steady, quiet suffocation, not like an intense asthma attack, so perhaps not obviously asthma.

This is why, as time went on, her treatment of me worsened. I temporarily did not embody the qualities of a “great student” anymore, not even an “ill student,” but she considered me to be a “lazy student” because of how my illness manifested. For the most part, I appeared cognitively impaired and showed the symptoms of extended asthma, not an asthma attack, so it was not treated seriously. Rather, it was an inconvenience, not for me, but for her, and that was her concern.

I can assure you that I have never been, and never will be, a lazy student. If I ever temporarily exhibit behavior reminiscent of this, it is likely due to a CVD symptom. As a result, however, my illness became a burden and, by extension, she treated me as if I intentionally caused it or had any control over it.

Regardless, despite everything, I graduated with great grades, holding two Bachelor’s degrees, two Minor Degrees, and a certification to teach the Chinese language.

Now, one could chalk this experience up to her being a cruel, borderline despicable individual. However, considering the rest of my experiences, I wish I could say that it was a singular event and that there was not a trend of negativity when invisible symptoms of the CVD became visible.

Alas, I cannot.

When I moved to China to work for an international organization, I intentionally picked the least polluted city I could find, as it was right on the tropical southern coast. The constant sea breeze addressed the potential issue of accumulation of far too much pollution hanging in the air at any given time… or so I thought. It helped. A little.

As a result, I was treated well upon my arrival. But that was brief.

In this instance, my visible signs of CVD became a problem almost immediately. My short arm justified the locals calling me “残疾” (cánjí). Initially, I was confused because I had studied Chinese for years but had never encountered that word. While it definitionally means “disabled person,” the way my colleague explained it to me at the time was that it meant “garbage human.” Because, traditionally, in Confucian beliefs, if a child was born deformed, it was thrown out like garbage.

Therefore, it was assumed that my arm was a product of my birth and not my CVD. And even then, as it was later explained, any form of disfigurement was treated the same way. As a result, my visible symptoms of CVD were the excuse for students, their parents, and colleagues to treat me just as it implies. Like garbage. They called me “unclean,” “cursed,” and “ugly.” This gave both local parents and students the social and cultural permission to come up to me and tell me that “you should have been killed at birth” regularly. This was the justification for robberies and many other abuses outside of work I experienced there as well.

However, this was not strictly an issue with the locals because most of my “western” colleagues behaved similarly, but for different reasons. One time I was called in to help with a misbehaving student, and the teacher told me to sit next to him so that the child could hit me until he was tired and shamed enough for sitting next to me to listen. I was also the only teacher on the site without a room of my own. Initially, I was told that I had less experience than the others, and I accepted that. However, as the months passed and more, fresher, and less experienced teachers came in and immediately received a room, it became clear that skill had nothing to do with it. Rather, it was who was more “marketable.” So, despite my education and experience, it came down to who was less “ugly.”

Luckily, I used this to my advantage. They put me in charge of “Reading Time,” which was a glorified homework time to sit around and wait for class. Given my background and love of reading and writing, I turned it into an actual reading time, where students earned stickers based on how much they read. Ironically, parents began scrambling to try to get their kids into my class after that, but the cruel behavior continued regardless.

Understandably, this only further compromised my lung function, which made my asthma worse, made it all the more possible because of the invisible aspects of CVD.

But as time went on (weeks to months), I got sicker and sicker. This was mainly due to constant exposure to kids who were brought to the school sick, which was further exacerbated by the poor air quality, especially in the winter. My constant colds were so frequent, in fact, that I woke up one day to head to work, coughed, and spat up blood. I went to the doctor, and, while I was physically fine at the moment, I had been ill so frequently that my lungs were damaged.

One question that I am often asked when telling stories like these is “Why did you put up with this treatment?” It is more difficult than it seems. I am aware that this is frequently the excuse for partners staying with their abusive significant other. But it is complicated, as I literally cannot leave the source of these problems behind me.

It is stuck in my chest.

Additionally, I grew accustomed to it because I had hoped it would be worthwhile. Given that the others are healthier than I am and therefore more desirable, in theory, or the theory I was brought up believing, if I did my best to make myself better, then I would ultimately be.

Now, I see the flaw in this logic, but at the time, I had hope. That alone kept me in the obviously abusive circumstance. Furthermore, despite its many, many, many flaws, the company had excellent health insurance, so, ironically, I could afford to sustain lung and heart damage from my work that I needed to support my congenital heart condition.

The things people will do for health insurance and the longer life it brings are remarkable.

Despite this, I continued to try, work hard, and do everything I could to help at work, achieve my goal of earning a master’s degree, secure a career, obtain health insurance, and finally being free from the crushing weight of the financial stress of medical health concerns. In hindsight, this seems foolish. But when all you know is your illness and you can literally hear your heart ticking in your chest, such dire circumstances are never far from your mind.

Even in Germany, this reaction-based dynamic between visible and invisible aspects of CVD continued.

After I left China and came to my program in Germany, I again had a great year. Yes, the air quality fluctuated, but for the most part, I could breathe and flourish in my field, which I had always wanted and worked so hard to achieve.

Then my pacemaker broke. I grew weaker, and no one knew why, not even me. But as time went on, my symptoms became more evident to everyone, including me. However, I had no explanation for it, nor was there an outside gauge to measure it. Most of my “friends” began to ditch me because I was no longer strong or valuable, and everyone assumed it was burnout and depression. When I started needing naps in the middle of the day, they called me a child instead of even thinking I may be sick. I don’t blame them for not knowing how serious it was, but I do blame them for leaving me behind when I asked for help.

Furthermore, after getting a new pacemaker, I returned to Germany, and people who thought I was normal apart from the visible signs of CVD realized that I had CVD and/or a pacemaker that broke. This made many assume I was frail and that I had basically lied to them about my health. In Germany, CVD itself is very common in the elderly and is considered basically an ill omen and a sign of perpetual, terminally poor health. Thus, internship opportunities and relationships I cultivated disintegrated almost immediately as if I had been untruthful.

This can be put down as to what counts as strength to those who have CVD and to those who are “healthy.” What counts as strength in the hospital, pushing yourself past your weaknesses to heal and achieve your goals, does not translate well to the workplace. It’s a one-way trip to burnout and/or increased illness. However, to secure jobs with insurance, this is often a requirement.

If you are struggling and have a disability (especially CVD), in my experience, it is assumed that you are struggling because of your chronic incurable illness, so your suffering can’t be helped. And if anything, it causes unease in others. So, logically, in order for the individual not to experience any form of emotional distress, the source of it should be avoided. Therefore, the person with CVD is often overlooked by others in the interest of avoiding discomfort and inconvenience to those around them. This can be considered a broadly social and cultural response, allowing others to use the illness and its impracticality as an excuse to treat the person, at best, differently, and at worst, cruelly.

When the ill become impractical or inconvenient, the way others treat them is liable to change. Perhaps to hope that it does not is naive, or possibly, assuming that people with CVD are the sum of their temporary symptoms is just as ironically thoughtless. While most of my experiences in this matter have been negative, they have given me an unusual clarity to discern people’s motives. Those who have stuck with me throughout it all are more treasured to me than the most precious gems. Albeit, in all those years, these are few and far between.

Never lose hope in others’ ability to help and appreciate you if you have CVD, but I caution you not to assume that those who do not have it can fully grasp the illness, will treat you with respect once the extent of it shows, and your value becomes inconvenient.

From the USA, China, to Germany, I have found that each place has a cultural or social reaction to CVD and its symptoms. And, it should be remembered, that if you have CVD, be prepared for a response, but don’t let your need for health and following a commonly prescribed path to achieve an assumed longer life cause you to tolerate abuse because of your illness or any inconvenience it causes those around you.

I did that for too long, and while I did survive, my condition worsened significantly as a result.

What are some social/cultural reactions you’ve experienced with your CVD?

Reference List:

Havranek, E.P., Mujahid, M.S., Barr, D.A., Blair, I.V., Cohen, M.S., Cruz-Flores, S., Davey-Smith, G., Dennison-Himmelfarb, C.R., Lauer, M.S., Lockwood, D.W., Rosal, M. and Yancy, C.W. (2015). Social Determinants of Risk and Outcomes for Cardiovascular Disease. Circulation, 132(9), pp.873–898. doi:https://doi.org/10.1161/cir.0000000000000228.

Keteepe-Arachi, T. and Sharma, S. (2017). Cardiovascular Disease in Women: Understanding Symptoms and Risk Factors. European Cardiology Review, 12(1), p.10. doi:https://doi.org/10.15420/ecr.2016:32:1.

National heart, Lung and Blood Institute (2023). Coronary Heart Disease - Living With | NHLBI, NIH. [online] www.nhlbi.nih.gov. Available at: https://www.nhlbi.nih.gov/health/coronary-heart-disease/living-with.

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