Table 3 Quotes from the interviews regarding the process of maintaining work life living with irritable bowel syndrome

Being prepared

“I’ve done that because I’m tired. […] I do not have the energy to work full-time. If that has to do with the gut or not is very hard to know”

” If I feel something coming on, I try to swap tasks with someone so that I have the opportunity to hurry away. Because the problem is when I can’t leave when I have to”

“Now I have the possibility to work from home. And I do not use that opportunity very often, but it’s possible. So that is always… It feels good to have that possibility. If it should be needed. Then you have a toilet close by and you can be on your own, so that works quite well”

“I try to keep myself updated about if there’s any fun jobs available. But then I think “no, it’s not a good fit for me” […] I try to adjust after my ability”

Restricting impact

“It has affected me a lot, when I’ve traveled as part of my work, I’ve had to submit special need of diet and preordered food, at conferences and other meetings. And since a couple of years back I always bring a lunch box to work to know exactly what I eat”

“I’ve seen a nurse that works with hypnosis, with the gut in focus. […] I have worked with relaxation exercises for quite some time, so she says it is easy for me to go in and out of the hypnotic states or what they are called. So, I do yoga as well. Breathing, and then of course prayer as a tool for me as a Christian”

“The more you sit still, the worse the gut symptoms”

“We are three people who sit together and when we have talked it has been evident that we have different problems, and one of them is now about to go through examinations that you’ve been through yourself. So, it’s quite open discussions in that group”

“They don’t need to see what I am doing all the time. I do not need that extra ordeal. That I have to tell exactly where I am and that now I have to rush to the toilet”

Reconciling

“Once I had figured out what I had, what I could eat and what I could not eat, I just make sure to stick to that. Of course, I still have pain sometimes, but I have learnt to live with it. So, I do not think it affects me as much. Especially not in work life”

“It can be a struggle, but you have to keep in mind What is the alternative? What else could I do? And would that really make things substantially better? I’m not convinced”

“It’s not something I think anyone should feel bad about. It is not up to me to be well. You either are or you are not. I think I perform damned well anyways”

“I have had to learn that it is OK to make mistakes […] It doesn’t matter; I don’t work as a neurosurgeon or a pilot. It does not have any major consequences. If it does and someone gets angry, then that is the way that is”

“It would have been easier for the gut and everything to get an employment and just work. But that is not fun, so the head does not want that, so I listen more to the head than to the gut”

“I have understood that many people can’t work at all. So, then you can say that I am fortunate”

Adjusting

“But there have been many times where I have had to go home from work, especially when we’ve been two working [together]. Not because I have to go to the toilet but mostly because of pain. It gets even worse in some way”

“You have to relate to people all the time and how they think and react, and it can be hard. When you are tired, and in pain, you cannot really turn that off. […] The pain”

“But it’s not like I would stay at home an entire day; I won’t do that. Now that I have children it’s almost calmer at work than at home”