The lived experience of LGBTQ persons living with multiple sclerosis (MS): A critical analysis




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De Montfort University


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Peer reviewed


Multiple sclerosis (MS) is a neurological, autoimmune condition which affects the nervous system creating a number of physiological and psychosocial issues. Simultaneously, there is an expanding body of research in lesbian, gay, bisexual, trans and queer (LGBTQ) populations which indicates health inequalities due to heteronormativity. In spite this, research exploring chronic illness, neurological conditions and MS within LGBTQ contexts remains limited. Therefore, this study aims to explore the lived experience of LGBTQ people living with MS and it asks ‘How do LGBTQ individuals make sense of MS and what are its effects in their everyday lives?’ The research employed an innovate theoretical and methodological framework and it was posited within a critical health psychology (CHP) epistemological paradigm. A multi-method approach was undertaken employing verbal and visual data in the form of phenomenological interviews and participant-authored photographs. Twenty-eight LGBTQ individuals from a number of countries took part. Thirteen were cisgender lesbian, bisexual, and queer (LBQ) women, ten were cisgender gay and bisexual (GB) men, and five trans individuals. All data collected from the three groups were analysed separately using Interpretative Phenomenological Analysis (IPA). Three themes from each group were created. For the LBQ women group the themes are ‘changed double identity’, ‘threefold stigmatisation’, and ‘seeking relatedness and acceptance’; for the GB men group the themes are ‘complex integration of MS and gay identities, ‘stigma and estrangement’, and ‘salutogenic strategies’; and for the trans individuals group the themes are ‘doubly medicalised’, ‘multiply queerbodied’, and ‘searching for salutogenesis’. Considering the findings from the three groups holistically it was revealed that from the moment of confirmed MS diagnosis the LGBTQ individuals appear to progress to an individual transformation of the self. Subsequently, after this corporeal stage, the LGBTQ persons living with MS typically progress to a social exposure stage whereby they experience the enhanced force of multiple stigmas and incidents of discrimination. Finally, this mostly leads to the reaction and resistance phase whereby the individuals mobilise salutogenic resources in order to mitigate the losses of MS and the compromised aspects of the LGBTQ identities. These different phases and stages are revisited and retouched in a dynamic manner and in a non-linear way, echoing the fluidity and episodic nature of MS. How the groups react and experience MS differently is also considered. The findings have academic and real-world impact through recommendations for advocacy, policy change, future research and healthcare. The focus of the research on public engagement and impact is demonstrated through the activities that were designed and delivered as integral part of the study.





Research Institute