Table 5 Impact on relationships concept elicitation—summary of responses and example quotes

Impact on family role

“Because I had it when I was really young, I didn’t really know kind of like what it mean, kind of like the implications, like exactly how it– I mean, but, when I’m older, it’s kind of like, more or less get worried, kind of like when I met my partner, kind of like being open about it, and then planning the future, like I want to have children, how it may affect me. So I think there’s more– I think the older I am, then I think– there are some aspects that affect me, yeah.”

“Physically, it affects because innovation, especially cooking, you need to do a lot of cooking sometimes and you have like three, four, five hours in the kitchen and this stuff and it makes you tired, standing for long times, because before I never feel tired when I do the whole family would be patient. But now I feel very tired, even when I cook for two or if I have to machines and I cook half the time.”

Difficulty dating/starting relationships

“So fifteen years now and I’ve not had a partner since then so obviously it’s just that anticipation not trying to find a partner, not putting myself out there to meet people because of it. Purely because of that reason.”

Impact on intimacy and sexual relationships

“I would have to confess that it does impact my relationships. And that in hindsight, actually, because at the beginning I thought, okay, I would just live with it. I thought about the doctors, the [redacted] doctors who explained clearly that you can live with it. But after two or three years, I do realize that it– I do– I’m letting relationships evolve into sexual relationships, for instance, much less than before.”

Relationship strain/fear relationship may end

“But it’s actually– it’s a bit more difficult for my partner because he doesn’t really have the same level of assurance that I’m not a threat to other people that I do. I’ve lived with it. So, I can judge if it’s dangerous or not. Where for him, he suffers with OCD a little bit. And so, for him, everything is a threat. Even family members and potentially sharing meals. Things that we know that we’ve asked the doctor. They’re not things that will harm other people. But for him, he doesn’t know where the boundaries are and what the guidelines are. So, it’s difficult for him. And, then, that makes it difficult for me.”