Dating with a diagnosis: The lived experience of people with multiple sclerosis
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Tabassum, Kinza, Fox, Jackie, Fuller, Sara, & Hynes, Sinéad M. (2020). Dating with a diagnosis: The lived experience of people with multiple sclerosis. Paper presented at the MS Virtual 2020 (https://msvirtual2020.org/), 8th Joint ACTRIMS-ECTRIMS Meeting, 11-13 September.
Background: With an average age of onset of about 20-40 years, MS usually manifests during early adulthood, which is considered to be a critical period for the development and maintenance of relationships particularly dating and romantic relationships. People with MS can experience sexual dysfunction, fatigue, pain, reduced mood and bladder/bowel dysfunction. These difficulties can affect a person s ability to participate in many meaningful activities, including those that affect relationships dating, preparing meals, engaging in sexual intercourse and others. Research in the area has explored the experiences of people with MS in long-term relationships or in marriage. However, an increasing number of people are not in long-term relationships in their 20 s, 30 s and beyond. It is known that dating or entering romantic relationships has been shown to be difficult for those with physical disabilities who face stigma, negative societal attitudes and the fear of requiring care from potential partners. The experience of those with a progressive, complex condition like MS has not been explored in detail to date. Objectives: To develop a rich understanding of the impact of MS on romantic relationships and occupations related to dating. To better understand how living with a progressive, early-onset condition such as MS, interacts with/influences developing romantic relationships. Methods: This study used a descriptive phenomenological design. Data were collected through two online focus group. A purposive sampling strategy was implemented to identify participants that have relevant knowledge or experience to address the research topic. Participants self-recruited by contacting the authors. Participants were excluded if they (i) were co-habiting with a partner or married (ii) had a comorbid diagnosis of a neurological disorder or (iii) were not able to provide informed consent. The authors used Colaizzi s (1978) descriptive phenomenological method to analyse the data. Results: Six females and two males participated in the focus groups. Participants were aged between 23-37 years and had a diagnosis of relapsing-remitting multiple sclerosis. Years since MS diagnosis ranged from 4-16 years. Dating with a diagnosis of MS is a highly personal phenomenon, characterised by many individual differences in values and experiences. Core to the phenomenon were the process of personal decision-making about disclosure of the diagnosis, considerations about dating and couple-focused activities that were limited by pain or fatigue and ongoing adaptation to the fluctuating nature of the condition with partners in new/developing relationships. Planning for and engaging in dating was considered by some participants to be emotionally exhausting. Conclusions: There were a range of experiences of dating and relationships across the participants in the study. Participants discussed the most salient issues specific to dating with MS including diagnosis