Lesbian, gay, bisexual and trans* individuals living with multiple sclerosis: a visual ethnophenomenological exploration

Abstract

Background: The aim of this study is to understand the experiences of lesbian, gay, bisexual and trans*(LGBT) individuals living with multiple sclerosis (MS). There is little research on how members of sexual and gender-related minorities navigate the challenges of chronic illness. There has not been any research conducted within LGBT populations in an MS context, even though the impacts of MS are severe and specific in relation to aspects of identity, community participation and socio-cultural status. Method: The study uses a multi-qualitative methodological approach informed by an integrative theoretical framework influenced by critical health psychology, phenomenology and visual ethnography. Interviews are used with photographs authored by the participants. The data are analysed by means of interpretative phenomenological analysis (IPA). Sixteen LGBT individuals within and beyond Europe have taken part in the study. Findings: This presentation focuses on two themes which are illustrated through a series of extracts and images: In ‘Narratives of biographical metamorphosis’ we discuss the transformative nature of MS with regard to issues pertaining to identity and well-being. In ‘Navigating landscapes of heterosexism and ableism’ we explore the everyday challenges of being a disabled non-heterosexual individual and specifically in relation to interpersonal relationships and socio-economic status. Discussion: Ideas of LGBT-affirmative psychosocial support for people with chronic illnesses are explored. We offer recommendations of how the wellbeing of disabled individuals might be enhanced (information on accessibility informed by disabled persons themselves; awareness campaigns on the invisibility of chronic illness and disability). Finally, visually-informed dissemination opportunities are discussed.