Self-Worth and Congenital Heart Disease: What Guides Your Path
“Why does no one want me?” This question has plagued me since I was a very young child, as I can imagine it has crossed the mind of many people with congenital illnesses, especially congenital heart disease (CHD). It is one of the earliest wounds we receive when we are born ill, the assumption that we are an emotional, financial, or physical liability when compared to others. And so, considering this, is it so odd that as “sick children” we internalize this dynamic early on and often judge ourselves by the same toxic standard? One by which we can never beat? I believe I have found both the cause and the solution.
Oftentimes, growing up, I had to stay away from other children due to some medical needs or fragility caused by some medicine or a new diagnosis. As a result, an invisible barrier formed between me and others, but this gave me a unique opportunity and a desire to observe human behavior. This was primarily due to the fact that I was always told that people did not avoid me because of my illness, so using this as a fundamental framework, I set about attempting to determine what the reason for people avoiding me truly was, because the obvious answer was deemed incorrect. This experiment to determine the nature and secret of “wantability” when one has an incurable illness has continued for thirty-five years, and I finally figured it out. I wave the white flag. The nature of wantedness is based on long-term investment, and if someone is not a good long-term investment, then the “wantability” is considerably lessened. This is because the wantability is directly connected to the value they can offer another person. However, when one has a chronic or congenital illness like heart disease (CVD), it is extremely difficult to separate this “value” from a person’s worth. Despite my unique life, I sometimes find myself with a rather low level of self-worth, and, upon reflection, it is deeply tied to this issue. My concern is that others with CVD, especially the congenital variety, may experience this too, especially unnecessarily, and that is why I am writing this article and perhaps, to some extent, why I made this entire blog. So, that being said, let’s dive into this issue of “wantability,” “value,” and “worth” and CVD.
Now, in terms of wantability, one must make clear that this rises and falls like trends on social media. A glint of light in a rising and falling star. Like, for example, if you go on a hike up a mountain and you’re trudging up the rocky cliff face all day long, it makes sense that when you come home, your friends or family may avoid you and tell you to take a shower. It does not matter how much deodorant you apply or if you dunked water on your head on the way up; you sweat, so therefore you likely stink, hence the social avoidance. However, it is temporary. Take a shower and put on fresh clothes, and the wantability will likely return.
This dynamic is particularly well explained in the article, “Why Not Valure?” by D.J. Tinnes in 1918, which points out how, “the word ‘wantability’ is no doubt preferable to the form ‘wanted-ness’ if the aim be to indicate ‘the capacity for being wanted’ rather than ‘the essential fact that an object is actually wanted.’ But how are we to achieve the ‘statistical measurement’ of ‘marginal wanta-bility’ except through data registering marginal wantedness, the actual value-making quality?” (Tinnes, 1918). Although it is an older article, its age highlights the timelessness of this question and issue, even if it is approached from an economic rather than a social standpoint.
While I personally prefer to add older articles to my writing to provide time-specific context, in this case, I do so to highlight the timelessness of this particular issue. A person's wantability can change from moment to moment and be influenced by the social expectations of the time. However, this does not change the worth or value of the sick person, only the temporary wantability of the sick person.
For example, when I was a child, I was a poster child for the Children’s Miracle Network. It should be noted that I spent most of my childhood alone, wearing a fluorescent crossing guard vest to signal others to stay away from me because the adults around me were frightened of my getting hurt by the other children. So, you can imagine what happened when a video crew showed up to film a video of me in my “natural element.” All of a sudden, every person in my class and the school became my best friend, then lied, saying they had always been, and were overly kind to me as long as the camera was rolling. However, the second the camera went away, so did each and every single one of my small army of “new friends.”
This was not an isolated incident, however. In China, when I worked there, my value as a foreigner was high, but it was often compromised, making me the least desirable of all the foreigners on the crew. This is because of the cultural concept of “canji” often associated with disability within that culture, which made me what can be translated as a “garbage human.” So, one can see where this lack of value stems from in that concept. This impacted not only my workplace experience, but every interaction I had over a span of several years in that country. So, it is important to understand how traditional cultural and philosophical ideals can impact collective behavior, especially regarding disability. However, if one shifts the lens to Western societies where the value and worth of someone who is medically compromised can be amplified by the factors of performative “compassion” and “kindness,” oftentimes I find friends and family members behaving kindly towards me until the reality of my heart condition becomes “too much” for them.
My point is that life with CVD is a roller coaster, and basing the value of someone with a heart condition upon the opinions of others, especially when they do it to themselves, is folly at best and extremely dangerous at worst.
But you do not need to take my word for it. Recent studies have delved into the psychology, social integration, and systemic factors behind the impermanence of this “wantability.” The article, Wanting, Liking, and Preference Construction by Ariely, D., Brendl, M.C., and Dai, X. discusses how, “theories on preference construction, multiple preferences result from multiple contexts (e.g., loss vs. gain frames)” (Ariely, Brendl, and Dai, 2010). Thus, highlighting the diversity, variability, and instability of preferences by their very nature. Their research, “this implies that people can have different representations of a preference in different contexts” (Ariely, Brendl and Dai, 2010). This study draws “on Berridge's (1999) distinction between unconscious liking and wanting; we hypothesize that people may have multiple representations of a preference toward an object even within a single context. Specifically, we propose that people can have different representations of an object's motivational value, or incentive value, versus its emotional value, or likability, even when the object is placed in the same context” (Ariely, Brendl and Dai, 2010). However, in this example, we can apply the same concept to interpersonal relations: the social value of not an object, but rather a person with CVD, who becomes something of a social commodity in this context.
In that moment, my wantability skyrocketed and then plummeted the moment the catalyst, the cameraman, disappeared, and the one constant that remained the same, my heart condition, remained the same, and it was the social and hierarchical reaction to it that differed.
In all honesty, that experience on the playground impacted me more deeply than I initially realized, and it was only through recent retrospection that I realized why I draw my personal sense of worth as a student, scholar, and writer rather than from anything others can take away. Because I know my health condition inherently gives me less value in the hierarchy.
I am not saying that this reaction to someone being sick and using them as a means to make one feel better about their own situation or to boost their social standing within a group necessarily makes them a good or a bad person. I would like to, but in my experience, this reaction does not make someone good or bad, but rather, makes them entirely human.
I have crossed the world and never found a single soul who treated me like just a “person.” It always had to do with how I related to them or what benefit I could provide for them, regardless of whether we were bound by blood, contract, or friendship. My goal in this article is not to throw mud or point blame, but to draw attention to an aspect of CVD that I believe needs more attention.
However, there is a concern for people with CVD, specifically regarding negative social experiences. The article, Psychosocial Factors and Cardiovascular Diseases
by Susan A. Everson-Rose and Tené T. Lewis, discusses how “(a) negative emotional states, including depression, anger and hostility, and anxiety; (b) chronic and acute psychosocial stressors; and (c) social ties, social support, and social conflict. All three of these psychosocial domains have been significantly associated with increased risk of cardiovascular morbidity and mortality ” (Everson-Rose and Lewis, 2005). Now, no one in life is promised an easy track or even a moment free from conflict or discomfort. However, given how negative experiences in these areas can impact one's cardiovascular health and the outcome of the diagnosis, I would recommend doing all you can to protect your peace and your health by focusing not on others' reactions to it, but on how it is doing all it can to save your life — which in itself is a miracle.
Finding worth and strength in yourself despite systemic pressures and oppressions within a society or culture is the goal, because social value and cultural opinions cannot be expected to be permanent or solid blocks to build on. I have traveled the world and studied culture, and have concluded that a heart condition is permanent, but wantability and value shift like the tides.
If you have CVD, base your worth on your own strength, and it will never fail you because others surely will. I am not saying fight alone, but recognize your own strength and greatness and trust in the thing beating in your chest, because even if it is technically failing, like mine is, it is still the only thing that will never stop fighting for you as long as you live.
Can you relate?
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Tune in next Monday and Friday for more! I will be writing more now that I'm finally feeling better, so I'm getting a new, more frequent schedule.
Keep ticking, everybody!
P.S. Are there any aspects of CVD health or pacemakers you’d like to know more about?
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Reference List:
Ariely, D., Brendl, M.C. and Dai, X. (2010) Wanting, liking, and preference construction. Emotion, 10(3), pp. 324–334. [online] Available at: https://psycnet.apa.org/record/2010-09991-003 (Accessed: 9 August 2026).
Everson-Rose, S.A. and Lewis, T.T. (2005). Psychosocial Factors and Cardiovascular Diseases. Annual Review of Public Health, 26(1), pp.469–500. doi:10.1146/annurev.publhealth.26.021304.144542.
Tinnes, D.J. (1918). Why Not Valure? The American Economic Review, [online] 8(3), pp.585–586. Available at: https://www.jstor.org/stable/900 [Accessed 9 Aug. 2026].
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