Listening to the silence of pain narratives: A qualitative study of epistemic injustice in patient-clinician communication on medically unexplained chronic pain in Japan.

Abstract

This study aimed to explore how the narrative identities of patients with medically unexplained chronic pain change over time following repeated dismissal of their attempts to communicate their pain. We conducted a narrative analysis using interviews from the Database of Personal Experiences of Health and Illness-Japan. Participants were 16 adults living with medically unexplained pain (MUEP), including individuals diagnosed with fibromyalgia, complex regional pain syndrome, or chronic pain disorder, and individuals without a confirmed diagnosis. A reflexive thematic analysis, informed by the concept of epistemic injustice, was applied. We generated three themes that illustrate the painful processes through which patients gradually withdrew from narrating their pain. Repeated disbelief and dismissal by clinicians constituted testimonial injustice, while the lack of social or linguistic resources reflected hermeneutical injustice. These forms of injustice mutually reinforced each other, leading to anticipatory silence, withdrawal from help-seeking, and profound self-doubt. Some patients internalized blame for their lack of recovery, further deepening their isolation. Many expressed feeling "unworthy of being heard" and questioning their own credibility as communicators. In contrast, rare moments of sincere acknowledgment, such as "I believe you," provided substantial emotional relief and helped restore a sense of dignity. These moments were described as transformative experiences of epistemic justice. Besides persistent pain, patients with MUEP experience structural and relational injustices that silence their voices. The invalidation and suppression of patient narratives intensify their suffering and social isolation. Clinicians should cultivate epistemic humility and validate patient narratives, regardless of diagnostic certainty. Establishing institutional and cultural conditions that protect narrative spaces is both an ethical and practical imperative for the care of patients with MUEP.