N16 ‘Sex? Don't even remember what that is …’ exploring IBD patient engagement with online forums regarding the topics of relationships and intimacy
Barnes, H.(1);Fourie, S.(1);
(1)Universiy of Oxford, Nuffield Department of Medicine, Oxford, United Kingdom
Background
Online forums available to those living with Inflammatory Bowel Disease (IBD) are a platform enabling peer support. Some use online forums to discuss sensitive issues, such as the effect of chronic conditions on their intimate and sexual lives. This study explored the common topics regarding relationships and intimacy with IBD that are discussed on online forums.
Methods
This study collected anonymous data available from a public domain (online forum) and analysed it using Braun and Clarke’s thematic analysis. Data were collected from 15 threads discussing topics relating to IBD and relationships from 2008 to 2016. In total, it involved around 144 people engaged in group conversations on the topics. No subscription was needed to access the data, and all participants used pseudonyms.
Results
Two themes were developed from analysing online forum engagement on sensitive topics: Relationships and IBD and ‘Sex? What’s that?’. The most prevalent discussions were around broken-down relationships: ‘The guy I was dating when I was diagnosed broke up with me 6-8 months later, in large part because of how the disease was changing my life’. There were many concerns about the right time for disclosure of illness whilst dating: ‘I feel like 5 dates/one months was definitely the right time. It's not first date material.’ Participants actively sought others’ intimate experiences for advice and found consolation in sharing common experiences, particularly regarding symptoms affecting sex:’ Intimacy and Crohn's can be an awful combination’, or relationships: ‘I am dating two! My iPad and my UC! Neither snore, but both are very needy!’ Participants also expressed their findings of comfort from hearing others experiences online: ‘This thread gives us hope though that it is possible to be with someone with this disease’. Additionally, sexual minority groups can also feel that they have a platform where they can discuss sexuality without prejudice and easily access others of the same sexual orientation when asking for advice.
Conclusion
IBD patients use online forums to discuss their intimate lives when looking for help from others experiencing a similar situation or looking for acceptance. This suggests patients may feel embarrassed talking about sex and may not see their health care professionals as the first port of call for questions about intimacy, highlighting the importance of online forums in seeking peer support for such topics. Further research is recommended to understand how patients might prefer to express their worries in an anonymous, safe environment.