DIGITAL NARRATIVE MEDICINE IN ENDOMETRIOSIS TREATMENT: THE ENDONAR PROJECT

The research questions addressed in this thesis are whether and how uncertainty emerges from the narratives shared by the participants of EndoNar, a Digital Narrative Medicine project applied to the treatment of endometriosis symptoms. In Chapter 1, I outlined the theoretical framework in which Medical Humanities (MH) developed, focusing particularly on the shift from the biomedical to the biopsychosocial model, and on the relationship between art, science, and medicine. The analysis of this relation introduces the theme of uncertainty and interpretation, which unfolds throughout my research. After highlighting the complexity of pain-related suffering (Cassel, 1982; Noe-Steinmüller et al., 2024) and language (Chapter 2), I discussed the theme of the narrative structure of medical practice and communication (Montgomery, 1991) and I illustrated in Chapter 3 the method of Narrative Medicine set out by Charon (2006). Then I presented the main features of endometriosis (Chapter 4), the disease on which the case study illustrated in Chapter 5 focuses. The EndoNar Project focused on the application of a narrative-based medical approach in the symptom management of endometriosis. 69 patients and 3 doctors were enrolled in the project between October 2024 and October 2025. 44 narrative prompts, defined together with the Society for Digital Narrative Medicine (DNM) experts, and the hospital staff involved in the project, were administered to participants in the form of digital diaries on a safe web envirnoment provided by DNM. All the texts were collected in a corpus of 17728 words and 22 narratives. I analysed them according to Charon’s method (2006). I first carried out the first two steps of the triad theorised by Charon: connection and representation. In the connection phase, I performed close reading according to the five elements of frame, form, time, plot and desire. The analysis showed that uncertainty characterises endometriosis in several respects. Time is determined by symptoms of endometriosis, and oscillates between sudden, unexpected events on one hand, and the relentlessness of pain, its cyclical coming back, and its chronicity on the other. The frame of this project's stories features a social and cultural context with specific assumptions and gender bias on female pain. The plots of the stories mostly include a late and unexpected diagnosis, a strong impact of the disease on life quality and mental health, and a negative attitude towards the future. Yet, resilience and mutual support among patients emerged, too. The form of the stories features elements of autobiographic writing and a frequent use of interrogative sentences, of figurative language in the description of pain, and of the verb “sapere” (to know) in negative sentences. The need to review the parameters currently used to assess pain has emerged in several narratives. Being recognised as hurt and mistrusted sufferers is the patients’ desire (in Charon’s view of “desire”), while some of them want to support other patients through story sharing. Charon’s representation phase was not performed through parallel charts, but a semi-structured interview took place, due to the scarce narrative activity by doctors. The gynaecologists confirmed that the patients’ diaries allowed them to know more and different aspects of the endometriosis experience, especially at a non-clinical level. They opened up to the necessity of introducing new questionnaires to report and assess endometriosis pain, including more dimensions of pain-related suffering: this engagement marked a shift in the approach to the patients after the project (Charon’s affiliation, 2006). I integrated, to different extents, quantitative and qualitative methods in the case study, but different factors, such as the number of doctors participating, their time availability, and the duration of the project, affected the representativeness of my research. The interpretations of both readers of the endometriosis stories in this project (doctors and I) are partial, but can fit into an integrated perspective: mine, related to research in linguistics, and that of the gynaecological team. This research also highlighted the performativity of language: the gynaecologists’ request to continue the project means that the stories and the thoughts that patients and doctors shared through words and pictures turned into small, but meaningful, changes in the clinical practice.