The Double-Bind and CVD: An Experience
Imagine finding yourself in a cell with one hand tied in gold to one side and the other bound in leather connected to the other wall. You call for help while everyone around you laughs and points at you, making fun of your distress, and then asks you why you are not joining in like a normal person. They leave you behind bars until you "change." But what if the source of the friction is something that can never leave, but you are held accountable and bound in place by both hands to the hope that either side will redeem you… But realizing only one of those is truly holding you back. So, theoretically, the only way out of the cell is if you free yourself from both at once and walk out of your own volition with your own permission to do so.
In this example, the golden chain is social obligations, and the black leather cord is your physical needs. In theory, both hold you back. However, it is being tied by both hands that keeps you stuck. Both these needs of one's physical condition and social requirements are binding and easy to lose your freedom and identity to; but it is the influence of the chronic illness that remains permanent, while the other can be even more toxic.
Having CVD or any chronic illness is like this: being pulled in two directions in terms of having one's physical and social obligations, often pulling one in completely different directions, and your situation being poorer for both. It is a rigged no-win situation, and yet, somehow, you get blamed for the entirety of it by default… a prison not of your own making meant to confine and even control you through obligations to heal what can never be fixed and be wanted by people whose validation is based on the performance of said unreachable health and therefore as valuable as ash.
This double-bind between one's physical and social needs is something I believe needs more discussion if one has CVD or any chronic illness. On the surface, it seems obvious that medical problems may impact one's social life, but it is unclear whether and how the opposite is true. I have heard it said how important it is to have friends and family by your side if you are sick, and from a psychological and emotional standpoint, this makes complete sense. However, it cannot be stressed enough that when you have CVD, you become the captain of a ship, and it is even more vital to be vigilant of who is accepted to "join your crew" as it were. Social obligations may be worth it, but can also, both intentionally or unintentionally, be used against you to compromise your physical health as a means to control and/or manipulate you.
I'm sad to say that I have extensive experience in this. While I have over thirty years of experience with this, I have only just come to the conclusion that not only is this double-bind a situation I can never win, but also one I need to give up trying to win.
The dynamic of this particular type of double-bind is multifaceted, but the main one I've noticed is when the pull of social obligations becomes stronger and compromises medical needs. This leaves the individual whose situation is made worse by their socially worsened medical condition with the title of being labeled "unreliable," fitting the stereotype where one's personality and competence are directly connected to the severity of their medical condition. And honestly, academically and objectively, I personally understand the logic behind this one well, as I have had to deal with people who always drop the ball and who are utterly unreliable, and yes, it is frustrating. However, there is a distinct defining factor here that must be considered. The cause makes all the difference. If laziness is just a vice caused by a lack of discipline, then absolutely, there is a valid reason for said frustration. However, for myself and others who experience CVD or asthma, "unreliability" often is the result of the illness, a procedure, or the unsuitable environment itself and is completely different from who they are as a person. Therefore, the label is unjust and cruel.
An example of this is how I lived in Greeley, Colorado, and Shenzhen, China, which have notoriously terrible air quality, but I continued living there and did nothing about it because I was told it was my fault, as if it was some trial I had to pass in order to be worthy enough to breathe like other people. Because I grew up in a household of healthy people, breathing was determined by physical fitness and, therefore, worthiness. So, when I would gasp for breath, it was assumed to be due to my laziness, lack of moral discipline, and the illness that made me so. If I could conquer the CVD, then I would be just like them. Unfortunately, given this attitude and my desperate desire for social inclusion, I often found myself out of breath and unable to articulate myself for no discernible reason other than the now-obvious one being a lack of oxygen. However, back then, my friends and family made fun of me (and I overheard them lately highlighting how they still do it behind my back) with some variation of "That's just how she is." Connecting my illness to my personality as if they are one and the same, and that I logically deserve what happens to me as a result. Ironically, this inadvertently made me vulnerable to physical assaults and robberies throughout that time, too, which was brushed off as some sort of inevitability considering my condition.
Unfortunately, this dynamic followed me into my time in Germany, and even more so after my pacemaker broke in 2022. Ever since then, everything wrong with my breathing or health in general was ascribed to one of two things: 1) I was making it up, or 2) it was just part of my inevitable decline and therefore, ignored.
Plus, the severity of my illness was directly measured against the scale of how much of an inconvenience it could cause those around me. Like how I told friends and family I felt unwell for 4 months when my pacemaker broke, but no one listened to me and said I was depressed or just having a rough time until it was almost too late. It was the same these past 4 years in how sewer gas in my apartment compromised not only my breathing ability, but also my executive function and my ability to communicate. Regardless, I still told them something was wrong with the apartment almost daily and that I had trouble breathing, but they just told me to take it easy and clean more, even when my limbs grew so heavy and tired it felt like they were bound in chains. The thing is, because of the cognitive dysfunction and terror I constantly lived in, I believed them and lost trust in myself and my own abilities because they constantly told me I was wrong and how they were healthy and more "reliable." So I had to trust them and their social judgment over my own instincts just to survive.
That was the biggest mistake of my life.
Regardless, even though I could not breathe, I knuckled down and did what I could to get the best grades I could under the assumption that I could one day be wanted and that it would all be "worth it," and I would be healed because I trusted them and their frankly disturbing diagnosis that this lack of ability to breathe was "just in my head." Ironically, during this time, my friend and I were talking, and they got concerned that my lips suddenly went blue… but no one else seemed even slightly worried about that when I told them what happened. So, despite everything, I got an excellent GPA and graduated with applause from my colleagues when I spoke at graduation… even though I was panting the whole time.
However, there lies the danger: the need to be wanted… or rather, the hope of someday graduating from being unwanted.
Oftentimes, people with acquired or congenital CVD feel excluded and unwanted even by their own families and closest friends. Perhaps it is because their illness makes others uncomfortable or reminds them of their own mortality… or maybe it is the physical limitations that cause them to be unable to participate in the life others take for granted. Regardless, I have never met anyone with CVD who has not experienced this emotion deeply at some point in their lives as a direct result of their diagnosis.
Despite having an introverted nature, which I do, my need to be wanted, coupled with my need to be worth something because my illness has been used as a tool against me for so long, leaves me particularly vulnerable to the tug of social validation… even the control of it… even when it compromises my health. This is because of the idealized hope of it all being "worth it" and that, like a math problem, certain pieces could fit together and make me whole enough to be wanted by others and not exploited by them.
I am reminded of a saying from Ted Lasso that says, "It is the hope that kills you." And in all honesty, I could not agree more. When one is fighting a battle with CVD, ideally, the social support will be there to prop one up and help them through it. However, if it is not, then the hope that it could be if certain social obligations are met is, in fact, more dangerous than the medical problem itself.
I know this now because at the time, I did not realize that accepting "that's just how she is" actively harmed me. While my CVD is inevitable and a never-ending part of who and what I am, my decline is not. As long as I am maintained, I will be ok and, theoretically, will be able to live a long life (emphasis on the theoretical).
However, if the social factor that is pulling one towards it is convinced of the inevitable decline, then every problem you have will be attributed to that and not actual, solvable problems. I suffered from sewer gas poisoning in my apartment due to an allergic reaction that did not affect others nearly as much as it did me, but every time I mentioned it, my concerns were cut off immediately or explained away like I was 5 and/or belittled until I stopped mentioning it. I was told to clean by my annoyed cousin when I mentioned it for the hundredth time, and I did, and then, when my condition worsened because of the mold, it was blamed on my ineffective cleaning.
It was a no-win situation based on the fact that I am ill and socially controllable by others due to my desperate need to be wanted and hope that somehow if I were, then I could be healed and treated like a person, just like everyone else.
After everything — the sewer gas, the withheld medication, the AFib, the surgeries — I finally moved out this week, into a new apartment that does not have failing plumbing. For the first time in years, I am sitting in a place at low altitude with vines and trees outside my window where I can take a whole, deep, long-overdue breath.
All because I never gave up on myself and stopped playing the double-bind game. My allegiance is to myself, my health, and preserving my heart, my one and only ride or die.
This situation and social and medical abuse are not as uncommon as one might think. In fact, it's incredibly common for people with congenital heart disease to experience social and emotional abuse. The article, "Risk Factors for Abuse in Children with Congenital Heart Disease Presenting at a Pediatric Tertiary Care Hospital," by Westphaln et al. describes how "In the United States (US), child abuse affected more than 600,000 children with an estimated 1820 deaths in 2021. Children less than 1 year of age are at higher risk for abuse, with over 76% of cases reflecting the result of neglect by a parent or caregiver" (Westphaln et al., 2023). Thus, pointing to an increasingly studied vulnerability of people with congenital CVD.
Now, in my case, it should be noted that I might have congenital heart disease, a particularly severe case of it in fact, but I'm not a child. So my whole situation is completely different, right? Wrong.
Due to medical developments these past three decades, a growing number of children with congenital heart disease grow up to be adults with congenital heart disease and face the same problems even when they are older.
This dynamic is also one that is developing with recent studies. For example, the article, "Prevalence of Child Maltreatment In Adults with Congenital Heart Disease and Its Relationship with Psychological Well-Being, Health Behavior, and Current Cardiac Function" by Proskynitopoulos et al. points out how "child maltreatment is more common in ACHD and associated with decreased quality of life and depression and anxiety. Furthermore, we found evidence that self-reported child maltreatment is associated with decreased cardiac function. Given the longer survival time of patients with ACHD, identifying factors that may negatively influence the disease course is essential. The negative consequences of child maltreatment may be the subject of psychosocial interventions that have demonstrated efficacy in treating posttraumatic stress disorders" (Proskynitopoulos et al., 2021). As you can see, not only does this issue of congenital abuse, specifically neglect, happen in children, but also in adults as they grow older with their condition.
Oftentimes, the natural wear and tear of one's health can be attributed to the inevitable decline of one's cardiovascular and multiple systems failure due to the aforementioned diagnosis. Therefore, such symptoms can be written off as just unfortunate but tragic realities of people with CVD. However, that is not always the case. Some of these "negative consequences" are just another form of the control that those who commit this kind of neglect feel the need to establish — a pattern I saw clearly in what I experienced this year.
Since this April, I had a cardioversion and an ablation caused by 4.5 months of 100% AFib, directly caused by 4 months of withheld medication done by people I trusted who intended to prove to me that I was too weak by making me almost too weak to continue. However, I persevered, doing so with new eyes. This was an example of social expectations around my illness being used to not only cause this action but to justify it, because somehow a broader narrative, a lie, was crafted by them and fed to others that I had messed up my medicine and they had "rescued me." My attempts to explain it were attributed to my “poor mental health.” Basically, because of my broken heart, I was expected to break, and those who betrayed me felt they were doing something that would have happened anyway, but doing it in a controlled way so they could feel better about themselves.
When I first came home, I went to my usual doctor appointment, and I was told that I would need two procedures to fix the AFib. I was understandably upset, but the people who withheld my medicine were excited and smiling, saying, "She will have to stay longer!" Thus confirming my suspicions that this entire situation was far from an accident. Furthermore, before my cardioversion, I went to the hospital with RSV and woke up to that person videotaping me in a hospital bed, hooked up to machines and oxygen, and then turning the phone to herself saying, "Here we are again!" with a smile.
But I say never again. Now that I'm settled in this new apartment — the low altitude, the high oxygen, finally free of the sewer gas — I can breathe, in every sense. It needs to be noted that this was not due to outside influences desperately trying to save my life because of the consequences of my own idiocy, as was the commonly spun narrative. But rather, others had profited socially, for half a decade, from a situation I ultimately saved myself from. I mean this in how I heard and saw people talking about me behind my back and used my illness and those jokes to build a narrative around me without a single solitary one of them speaking to me, predominantly because they saw me unworthy and less than them in terms of social value. My condition was used simultaneously to bind the rest of the family together and exclude me for years on end.
My goal in this article is to raise awareness because I had no idea the depth of what I was facing for over three decades. So, if you have CVD, especially congenital heart disease, you may also experience this "double-bind" abuse strategy where your physical health and social health are pulling you in opposite directions, and achieving one directly compromises the other. Given my experience, I do not suggest cutting off your friendships or relationships willy-nilly, but rather using discernment about who has access to your life and who can join your crew on your "ship." Not everyone has your best interests at heart or sees you as more than your illness. However, when you do find people and good friends, like the ones I have in Germany, who see you as a person, treasure them more than anything.
Can you relate?
Comment below.
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:
Proskynitopoulos, P.J., Heitland, I., Glahn, A., Bauersachs, J., Westhoff-Bleck, M. and Kahl, K.G. (2021). Prevalence of Child maltreatment in adults with congenital heart disease and its relationship with psychological Well-Being, health behavior, and current cardiac function. Frontiers in Psychiatry, 12. doi:10.3389/fpsyt.2021.686169.
Westphaln, K.K., Imagawa, K.K., Smith, L.E., Srivastava, J. and Pike, N.A. (2023). Risk factors for abuse in children with congenital heart disease presenting at a pediatric tertiary care hospital. Congenital heart disease, 18(6), pp.657–670. doi:10.32604/chd.2023.044179.
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