Dating with a diagnosis: The lived experience of people with multiple sclerosis
Date
2020-12-07Author
Tabassum, Kinza
Fox, Jackie
Fuller, Sara
Hynes, Sinéad
Metadata
Show full item recordUsage
This item's downloads: 69 (view details)
Recommended Citation
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.
Published Version
Abstract
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