Women living with chronic autoimmune invisible illnesses : an autoethnographic study and narratives in Malta

Abstract

This doctoral thesis aimed to explore the experiences of women living with a chronic autoimmune invisible illness in Malta. Women diagnosed with chronic autoimmune illnesses have increased at alarming rates since the 1980s. Due to the subjectivity of the illness, medical professionals often dismiss symptoms as being products of anxiety, depression, or as being all in their head. Although research on chronic autoimmune invisible illnesses is vast across different disciplines, embodied and enfleshed research is limited. My story of the illness experience is presented alongside narratives of four other women collaborators. Evocative autoethnography, women’s narratives and writing as inquiry was used to present the illness stories underpinned by a feminist, postmodern and social constructionist approach. This study was initiated from a personal, situated standpoint in believing that individual stories are socially and culturally contextualised. However, I was oblivious to the continuous evolving process, the meanings in motion from the co-creation of other stories. I hoped to provide a platform for women’s stories to be told, heard, and made visible, whilst embracing the embodied emotional attributions intersecting with gender, values, beliefs, culture and understanding(s) of health and illness. By using evocative writing, I hoped to embrace vulnerability, resilience and suffering more explicitly, through engaging in the process of becoming as well as knowing self and others as a form of healing and transformation. The stories were presented in the form of found poetry, retaining women’s own words that were gathered during the respective meetings. Crystallisation was adopted to achieve depth and breadth of the material elicited through the already published research as well as the illness stories. Patterns were presented to provide a wide-angle perspective highlighting individual experiences through emotions, and expressions by using prose and poetry. As any autoethnographic research, the contribution to knowledge is believed to be multi-layered, depending on how the writing resonates with the reader and how the reader responds to the representation. Future research elicited from this thesis may include researching other genders living with chronic illness in Malta and to research the correlation that exists between identity, ableism, and chronic illness. Finally, on a practical level, I hoped to extend the use of practice-based applications and research in supporting different individuals and groups in using writing as therapeutic healing practice for wellbeing.