Conceptualizing Symptom Invalidation as Experienced by Patients With Endometriosis

Allyson C. Bontempo
Qualitative health research · 2025 · vol. 35(2) , pp. 248–263 · doi:10.1177/10497323241253418 · PMID:39116403
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This qualitative health research paper examines how patients with endometriosis experience “symptom invalidation,” focusing on how such experiences are conceptualized and lived by those affected. Using a qualitative approach, it analyzes patient accounts to describe the ways symptom-related complaints are dismissed or minimized and how this shapes patients’ understanding of their symptoms and interactions with others. A key caveat is that the findings are grounded in participants’ reported experiences and therefore reflect those perspectives rather than objective measures of clinical decision-making. This paper is centrally about endometriosis — it specifically conceptualizes patient-experienced symptom invalidation in people living with endometriosis.

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Abstract

The aim of this paper is to provide foundational work to standardize the conceptual definition of what I refer to as symptom invalidation by using invalidating environments and illness representations as guiding conceptual frameworks. Mixed deductive-inductive thematic analysis was used to analyze survey responses to an open-ended question gauging an invalidating interaction patients experienced with a clinician among 1038 patients with endometriosis. Dissimilarity in illness representations between patients and clinicians, as perceived by patients, occurred with feelings of invalidation. Invalidation was experienced in relationship to all identified domains of illness representations including how clinicians communicated the diagnosis (identity label), the internal (internal cause) and/or external (external cause) nature of the cause, clinicians' understanding of the timeline (timeline) and consequences (consequences), and clinicians' understanding of control over the symptoms via the efficacy of patients (self-efficacy) and coping procedures (response efficacy). Inductive analysis revealed invalidation can also be related to how clinicians communicate judgments of whether patients are presenting with ulterior motives (secondary gains). Clinicians' actions appear to compound experiences of invalidation by not having symptoms investigated (investigative experiences). Invalidating environments and illness representations serve as effective conceptual frameworks for providing a conceptual definition of symptom invalidation.
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Authors Metrics and citations Metrics Journals metrics This article was published in Qualitative Health Research. View All Journal MetricsPublication usage* Total views and downloads: 1309 *Publication usage tracking started in December 2016 Altmetric See the impact this article is making through the number of times it’s been read, and the Altmetric Score. Learn more about the Altmetric Scores Publications citing this one Receive email alerts when this publication is cited Web of Science: 9 view articles Opens in new tab Crossref: 10 - “You Cannot Be Yourself”: Identity disruption, stigma, and the lived experience of anal fistula - Understanding women’s decisions to seek an endometriosis diagnosis: A Health Belief Model approach - Gender and Ontological Friction in Endometriosis Diagnosis - Chronic illness experiences for young adults: a qualitative study - Demonstrating the need for and the validity and reliability of a supportive message quality measure within the patient-clinician context - Medical invalidation: A concept analysis - Understanding endometriosis knowledge among diagnosed and symptomatically at-risk individuals in Australia - ‘I don’t know what normal has been’: a grounded theory exploration of the journey to endometriosis diagnosis - Examining the Knowledge and Practices of Nursing Care on Women with Endometriosis in Cyprus - Diagnosing diagnostic error of endometriosis: a secondary analysis of patient experiences from a mixed-methods survey Figures and tables Figures & Media Tables View Options Access options If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below: loading institutional access options Alternatively, view purchase options below: Purchase 24 hour online access to view and download content. Access journal content via a DeepDyve subscription or find out more about this option.

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endometriosis

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

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