Box 8 Quotes regarding living and coping with IPF

“I want to be confronted with it (disease) as little as possible. I know what I have, I know what is heading towards me and that's it.” Patient2

“It is difficult, it is very difficult, difficult to accept. Yes, I get a lot of support from my wife, from her children, from everyone who says, ‘come on, let’s move on’, but I can’t go on anymore, it’s over, I'm finished. Yes, we talk about going on a trip again this year, but where to? To nowhere (laughs).”Patient 9

[…] it’s getting difficult to handle. Yes, and then you say sometimes, ‘let it be over soon, I want it to be over, then other people won’t be bothered anymore, then I won't bother anybody anymore. (sir is emotional) yes we will continue moving one […].” Patient 9

“You can always start whining and complaining, but you don’t help anybody with that, you don’t help yourself and you don’t help your loved ones, so I have no reason to complain.” Patient 8

“[…] yes, everyone you know actually lives with it too.” Patient 6

[…] with their daily worries and, uhm, yes, and you shouldn’t be an additional burden to them (family and friends) in any way.” Informal Caregiver5