TABLE 2

Participant quotes by topic

TopicQuoteCountry of interviewee/sex/age band in years
Impact of respiratory symptoms “I had to tell the group not to worry because I start huffing and spluttering as I'm walking.”UK/female/36–50
“When I listen to myself breathe, I always wheeze.”USA/female/18–35
Impact of sinus symptoms“I'm always blowing my nose, doesn't matter what weather it is.”UK/female/36–50
“I always have to blow my nose before I eat if I wanna taste anything.”USA/female/36–50
Impact of ear symptoms/hearing loss“You have to ask people to repeat themselves so many times, they're just, like, ‘oh don't worry about it’.”UK/male/18–35
“I can't go white water rafting because I have tubes in my ears and my ears can't get wet.”USA/female/18–35
Impact of fertility issues“Finding out that I possibly can't have kids; that's when it started to panic me a little bit.”UK/male/18–35
“I'm still very uncertain if I ever wanna have children because I don't know how me having this illness will affect them.”USA/female/18–35
Impact of treatment burden“I don't really want to do it; it's kind of boring and it's not fun and I'd rather do something else. But obviously you have to do it.”UK/female/18–35
“I think it just requires more planning. I need to wake up earlier or start getting ready for bed earlier, I need to come home from work and do this; it's just more planning.”USA/female/18–35
Emotional functioning“I'm so frustrated with this illness, I just want it to go away, but, unfortunately, that's how I have to live.”UK/male/18–35
“…if you go to the doctor [and] you're feeling pretty good and you know your numbers are not good; that can be a big cause of anxiety.”USA/female/18–35
Social functioning“It has had such a huge impact on my life, and certainly I think it's contributed to the breakup of my first marriage.”UK/female/50–64
“…there have been times where I've had to cancel things because I've gotten sick. Getting sick can happen overnight; you're fine one day and the next day you feel awful.”USA/female/18–35