Key result
A 40-year ARVC case generates six falsifiable propositions on cardiac illness psychology and disclosure.
Why the study?
The psychological aspects of cardiac illness, including distress and its disclosure, have not been studied with the same seriousness as cardiac rhythm disorders.
This autobiographical account emphasizes the profound and often hidden psychological burden of living with arrhythmogenic right ventricular cardiomyopathy and proposes a conceptual framework to rigorously study patient distress and disclosure.
For most of my life I have carried two burdens at once: a body I could not fully govern, and a distress I could not always afford to say out loud. This working paper argues that they belong in one account, and that the conditions shaping distress also shape whether anyone sees it. I read my own history against experimental, observational, qualitative, and conceptual research. It runs about forty years: a family that came apart when I was young, an adolescent injury that became an opioid addiction, self-taught technical work, and a decade of arrhythmogenic right ventricular cardiomyopathy lived while working inside American healthcare. It includes work that troubled my conscience, and help-seeking that brought real care alongside hard problems of credibility. From that reading I propose a life-course framework linking controllability, belonging, moral conflict, and the conditions of disclosure. Its central claim is that missing is not zero. Threats to credibility, livelihood, or belonging raise the cost of being seen; steady professional output stands in for a wellness it never measured; and a good clinical outcome can make continuing distress harder to believe. A state-and-observation model separates a person's changing condition from the reports a setting allows. Six falsifiable propositions and a staged prospective design follow, with attention to reverse causation, competing explanations, measurement reactivity, informative missingness, privacy, and the duty to respond once distress is recorded. My account is testimony. It generates hypotheses, not causal proof. I offer it so that the psychological side of cardiac illness is studied with the seriousness already given to the rhythm.
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Matthew J. Adams (2026) studied Arrhythmogenic right ventricular cardiomyopathy (n=1). Personal history of arrhythmogenic right ventricular cardiomyopathy was evaluated. A 40-year autobiographical account of arrhythmogenic right ventricular cardiomyopathy generated 6 falsifiable propositions regarding the psychological impact and disclosure of cardiac illness.
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