The phantom cells: an autoethnography of medical uncertainty, bodily betrayal and loss

Purpose This paper aims to explore the lived experience of navigating high grade cervical glandular neoplasia (CGIN) through an autoethnographic account of prolonged diagnostic uncertainty, bodily betrayal and loss. It seeks to examine the emotional, psychological and ethical consequences of conflicting screening results and inconclusive histology within contemporary HPV based screening systems. Design/methodology/approach An autoethnographic methodology is employed, drawing on personal medical records, clinical correspondence and reflective narratives. The analysis is informed by theoretical frameworks of biographical disruption, liminality, diagnostic uncertainty, epistemic injustice and medical trauma, situating the author’s experience within wider sociological and healthcare contexts. Findings The findings reveal that prolonged diagnostic ambiguity creates a state of liminality characterised by hypervigilance, loss of identity and emotional distress. The reliance on binary HPV screening protocols is shown to marginalise complex cases, producing injustice. The eventual preventative hysterectomy, despite benign histology, illustrates the paradox of undergoing life altering surgery for a “phantom” disease, resulting in profound non death loss and compounded trauma. Research limitations/implications As a single autoethnographic account, the findings are not statistically generalisable, however they offer deep insight into the psychosocial impact of diagnostic uncertainty. The paper highlights the need for more flexible, patient centred screening pathways and for clinical recognition of distress in the absence of confirmed disease. Future research should explore the experiences of other patients navigating similar diagnostic liminality. Originality/value This study provides a rare, first person account of living with unconfirmed yet persistent cancer suspicion. By centring lived experience as a form of expert knowledge, it challenges the dominance of binary diagnostic frameworks and contributes a critical perspective on the emotional costs of modern preventative medicine.