TABLE 2.

Themes and related quotes

Theme	Related quotes
Journey to diagnosis	Q1. Participant 1: “I was diagnosed 2 y ago, it was going on for 20 y” Q2. Participant 1. “For years you're told that you're mad like then all of a sudden someone says 'oh well there's actually a name on this” Q3. Participant 4: “The doctor dismissed it and I took on board that this was a mental problem” Q4. Participant 5: (When paraphrasing their initial HCP's comments)“Yeah there's no such thing as that, a made up thing, you found it on Google” Q5. Participant 1: “…it almost feels like justification to me that like I'm not mad” Q6. Participant 4: “You still have a battle in your mind to stop the thoughts coming in that there is something wrong” Q7. Participant 3: “The staff have been great for me like, obviously it's very helpful” Q8. Participant 1: “I'm probably never going to get over this in a way” Q9. Participant 4: “Once you start talking about it you know the genie is out of the bottle and it enables you to be more talkative whereas for years in my case was from so many years bottled up where you didn't you couldn't talk about it”
Emotional impact	Q10. Participant 1: “I've always noticed peoples' breathing over the years…But it's something you're always a bit paranoid about where someone's breathing really heavy and you're thinking 'oh god why are they breathing so heavy…it's because of me” Q11. Participant 4: “I thought that when I go into the room or the church that because I had this fish smell, which I didn't realize what it was, that it would be noticeable that I was there and that might spoil the event” Q12. Participant 2: “I'd rather someone [call me an offensive name], but not for someone to say 'you smell'. That's like the worst thing, especially when you're clean…hyperclean. It rips you. I'd rather someone say anything else to me. It's an awful one. It's dirty….you feel dirty” Q13. Participant 1: (In response to: “Any suicide attempts?”) “No, no…thought about it, thought about it a good bit” Q14. Participant 2: “She's a lovely person but I found she didn't, which many people can't, like who can empathize completely to the disease” Q15. Participant 4: “The group is a really good thing…that people have been able to exorcise the demons”
Navigating daily life	Q16. Participant 1: “I would just try to avoid people, keep to myself and stuff like that” Q17. Participant 2: “Even getting the train up here, I booked my seat. I try and get the seat that's only two people sitting in and at the edge. Everything is premeditated” Q18. Participant 3: “I'm comfortable like I've said. I'm not going to let it get me down and I shouldn't” Q19. Participant 2: “For 2 or 3 y where I was just numb with depression is how I'd describe it….it consumed me, 99% of my life. It's all I ever thought about” Q20. Participant 2: You go about your daily life and nothing changes. It's still not known who's going to sit beside you, will they say something. And to be honest, most of the time people don't but you just…never know” Q21. Participant 5: “I didn't bother telling the lads. I'd be very careful about whom I tell which is probably stupid like because they probably all know…it's just such a personal thing” Q22. Participant 4: “The way I look at it, they can have their own thoughts on it whatever way it is. I'm telling them so they can understand my situation, or not understand it whichever”
Relationships and long‐term functioning	Q23. Participant 1: “I do have a large group of friends but I'm not really close to anyone” Q24. Participant 5: “Not that I don't want to but it's just kind of easier not to like I wouldn't trust people very easily anyway, so then to meet somebody or a group of new people. And to think that there are talking about you behind your back the same way that other people have and then, do you tell them, do you not tell them…just easier not to” Q25. Participant 1: “Yeah…yeah…it was a relief, it was almost like oh god at least I don't have worry about stress, get stressed out by these things” Q26. Participant 2: “Kind of like relief, even though after, there's realization that I've just ended a potential long term relationship with someone who I shouldn't have ended it with” Q27. Participant 5: “I've intentionally ruined things or caused a break up. Just the thoughts of being with someone or them being around me all the time was just too much for me, like growing up and over the last few years” Q28. Participant 1: “I would have had a few drinks in me so I would have used alcohol as a…just help…I suppose, to relieve the stress” Q29. Participant 3: “So that'd be the only thing that would hurt me the most would be if he gets it because I have it” Q30. Participant 6: “If we ever have children as like I think I could be a carrier and I like maybe if I ever do get pregnant, I don't know if he can get tested to see if he's now the chances are he's probably not a carrier, but that would be the only way that I'd wonder like I'd hate to pass this on to the child”