“It’s Like a Double Whammy!”: A Photo-Phenomenological Analysis of the Experiences of Lesbian,Gay,Bisexual,and Queer People Living With Multiple Sclerosis

Abstract

Multiple sclerosis (MS) is a neurological, autoimmune condition which affects the nervous system, creating several physiological and psychosocial issues. Simultaneously, there is an expanding body of research on lesbian, gay, bisexual, and queer (LGBQ) populations which indicates health inequalities due to heteronormativity. Despite this, research exploring chronic illness, neurological conditions, and MS within LGBQ contexts remains limited. Therefore, we aimed to investigate the experience of LGBQ people living with MS. We undertook a culturally responsive multi-method approach, employing verbal and visual data through phenomenological interviews and participant-authored photographs. Twenty-three LGBQ individuals from several countries took part. All data collected from the three groups were analyzed separately using interpretative phenomenological analysis (IPA). We created three interrelated themes: (a) (Loss and) the perceived incompatibility of MS and LGBQ Identities, (b) Multiple stigmas, estrangement, and discrimination, and (c) Surfacing through community, resistance, and resilience. It was revealed that from the moment of confirmed MS diagnosis, LGBQ individuals in this study appear to progress to an individual transformation of the self. Subsequently, the LGBQ persons living with MS typically experience an amended social exposure whereby they experience the enhanced force of multiple stigmas and incidents of discrimination. However, participants noted reaction and resistance against both the attack of MS on their identity and against the multiple discriminations. These different phases and stages are revisited and retouched dynamically and non-linearly, echoing the fluidity and episodic nature of MS. The findings have academic and real-world impact through recommendations for advocacy, policy change, future research, and healthcare.