Table 3 Participant quotes describing impacts on patients’ lives

Physical functioning (decreased physical activity, work limitations, household and family limitations)

Oh yes. It's a huge impact. Always tired. Tired and fatigued. I'm limited…like my work, I may work 20 h per week due to doctor's appointments, treatments. And I have a 15-year-old and a 7-year-old, so a lot of things I cannot do because of my health. Simple household stuff is very limited. I probably can stay up on my feet probably about 20 min and then I have to sit down. [Participant 17]

I own a business and it’s me and my husband together, so it’s impacted me and the responsibility that I have to do, but it’s not that I’ve had to go out on disability or things like that. I’ve still been able to kind of help and direct. He’s picked up a lot of the pieces since all of this has happened. I’m not doing my usual activities like yoga, things that really require a lot of energy or taking trips and drinking that might be adventurous and taking trails and hikes. [Participant 15]

So, for me, the symptoms are more around feeling tired, not being able to exercise as much as I would like to. I can't take long walks. I used to be a runner. I can't do that anymore. I mean I can, but I just get really, really tired quickly. [Participant 12]

Definitely when my tiredness was getting worse and I was always run down. And I just felt… I felt like I had the flu, and what I kept telling people. And, yeah. And it felt, I couldn't get out. [Participant 1]

Social life and motivation

It's not fun. Sometimes it's really hard to get up in the mornings, to get going, because my body's sluggish and I'm tired. It was hard, like when I was working, to get up and get going. And getting to work and being there all day, it was draining. So, it's definitely affected my life and my social life, and what me and my husband used to like to do. Now it's like, it's not enjoyable for me anymore. [Participant 3]

Importance of time as a concept

I'd be then I'd be okay what are the side effects is that four months’ worth that amount of side effects. That's what I would be considering. Yeah, but time, time is, I mean, my first key… [Participant 2]

I'm 36 and I have two toddlers that I want to be a mother to, so I will do whatever I need to do to prolong that honestly. [Participant 6]

Haven't had surgery. Like I said originally, I thought I would maybe do reconstruction, but at this point, it's not worth my time being holed up in recliner when I can… [Participant 6]