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Diagnosis, narrative identity, and asymptomatic disease

Abstract

An increasing number of patients receive diagnoses of disease without having any symptoms. These include diseases detected through screening programs, as incidental findings from unrelated investigations, or via routine checks of various biological variables like blood pressure or cholesterol. In this article, we draw on narrative identity theory to examine how the process of making sense of being diagnosed with asymptomatic disease can trigger certain overlooked forms of harm for patients. We show that the experience of asymptomatic disease can involve ‘mismatches’ between one’s beliefs about one’s health status on the one hand, and bodily sensations or past experience on the other. Patients’ attempts to integrate these diagnoses into their self-narratives often involve either forming inaccurate beliefs about bodily sensations and/or past experience, or coming to believe that feelings and experience do not necessarily track or predict health status, leading to an ongoing sense of vulnerability to ill health. These resulting alterations in self-understanding can sometimes be considered harmful, in view of their implications for ascriptions of responsibility and ongoing anxiety.

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Notes

  1. 1.

    The distinction has been in use since the 1950s, such as in the work of Parsons [1, p. 651].

  2. 2.

    Some studies indicate that these outcomes can result from the receipt of the medical label itself, rather than the illness associated with it [6, 7]. Our discussion is consistent with these psychological findings but provides a way to understand the experience qualitatively.

  3. 3.

    There have also been several studies that evaluated whether diagnoses of cancer from screening detection are more distressing than other diagnoses, using psychological assessment measures, though these have conflicting results [20, p. 789].

  4. 4.

    While we focus on qualitative studies here, we note that psychological studies indicate that a false positive diagnosis is associated with measurable increases in anxiety and decreases in calmness (see [22, p. 793; 6]).

  5. 5.

    Being diagnosed at risk can, however, be interpreted and treated similarly to being diagnosed with a disease, by both doctors and patients [24,25,26].

  6. 6.

    This feature of narrative is connected to its use in resisting what some have argued is a homogenising tendency of diagnosis, and medical understanding of patients more generally [e.g., 33, 34]. As the purpose of this article is not to resist homogenisation but to begin to better understand this kind of experience, this is not a specific issue for us, though we recognise that the generalisations we draw in the fourth section of this article will not apply to everyone.

  7. 7.

    See also Hacking [36]. In Hacking’s terminology this is a ‘looping effect’—a consequence of our practices of categorising or ‘making up’ people.

  8. 8.

    Some similar points can be made about a diagnosis of disease where there is illness, of course, especially where the symptoms experienced are minimal or sudden; in the cases we focus on, the discontinuity would be even sharper. See [40] for a discussion of this idea in the literature on the experience of illness.

  9. 9.

    As noted above, this second mismatch may also occur with symptomatic diseases, and people’s responses to it might also follow the strategies we describe here. We think the drive to explain the occurrence of disease may be stronger in cases where there are symptoms, because an absence of symptoms leaves the diagnosis more in need of explanation: the lack of symptoms can make the transition to thinking of oneself as unwell, and finding a way to identify oneself as such, more difficult.

  10. 10.

    It is worth noting that changing the subjective quality of experience in the general ways described at the start of the fourth section above could be considered a harm, if, for example, the alterations increase distress. Changing the subjective quality of experience in such a way might also be considered a matter of social concern if it is widespread, with regard to the way it changes power structures in relation to medicalisation more generally, for instance (see, e.g., [41]). As these claims seem to require further argument, however, we mention them in order to leave them aside.

  11. 11.

    Some of the trends described in the first section above are likely to encourage patients to respond to such diagnoses in this first way, and not the second. The implication of diagnoses made with preventive aims is that patients can influence future disease progression, but this is not the case for some or many patients or diseases. When disease occurs, patients will be more likely to narratively integrate the contingency in a way reflecting this belief about control, rather than regarding it as a contingency.

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Correspondence to Mary Jean Walker.

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Walker, M.J., Rogers, W.A. Diagnosis, narrative identity, and asymptomatic disease. Theor Med Bioeth 38, 307–321 (2017). https://doi.org/10.1007/s11017-017-9412-1

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Keywords

  • Diagnosis
  • Narrative
  • Personal identity
  • Disease
  • Illness
  • Labelling
  • Overdiagnosis