Table 2 Quotes of participants on work and coping with the disease

1

P1.5: Almost 4 years ago I got acute and complete RA manifestations in almost all of my limbs, symmetrical. Everything fell apart. I use the normal ‘MTX misery’ and I’m greatly improved. I have a very positive look on everything. But my whole worldwide career was over and out in one stroke.

2

P1.7: You will not be cured. You can say goodbye to that. But you can adapt to what you ARE able to do. You don’t have to look at what you can’t do.

P1.2: That kept me at work for 20 years.

P1.7: They threw me out of my job because I visited the doctor too often.

3

P2.3: Yes, at a certain point I had to decide that I would step back from my company because I physically couldn’t handle it anymore. But I kept at it long enough to get the business on its feet.

P2.2: And that’s pretty difficult, when you’ve started it yourself, such a business.

P2.3: You bet.

P2.2: So you’re completely out of it?

P2.3: Yes, in the end I was declared work disabled, but the company is still running and I’m the nicest volunteer there.

4

P3.4: I’ve had arthritis for the last 18 years and especially the last 5 years it has had enormous impact. It went pretty well for quite a long time. The first year was really bad, I was on sick leave the whole year. Then, after starting with medication, actually, I started building it up again slowly, and up to 5 years ago it was sort of stable. And now it’s so bad, especially the last half year, that sometimes I think I’m just going to let everything drop and quit. It might not look like that today, but that’s the way it is…

P3.2: It varies from day to day.

P3.4: Yes, yes, so actually I’ve now been declared fully disabled for work.

5

P2.1: The limitations are a constant search for what your limits are, I find that very difficult. And I’m also finding out that even after all those years, I don’t really know the balance, because I don’t know. The moment I feel up to it, I go all the way and then a few days later you get a relapse, so that is bothersome. Walking is hard, you have pain, fatigue. So there is always a sort of constant considerations what to do. Sometimes you get a flare if you’ve gone too far. So you’re constantly making do and I find that very hard.

6

P2.5: Sometimes it’s really weird, because then you want to pick up a pen and you can’t for some reason… your hand locks down and you can’t get the pen into your hand. And sometimes I can suddenly have a day where my leg really hurts, but not the joints, just the muscle, and it lasts for a day and then it is gone and I really drag my feet and stumble around for a day and the next day it is gone.

7

P2.3: And then somebody says: are you coming sailing this weekend. And I say: yes! And then the first day goes well, and the second day slightly less, and then you get home and the next three days you’re sort of knocked out a little. And, so, I really have to make a positive choice. I just feel like to be out on the water, too bad. Then the week after I’m washed out, sort of. You should stop when it is still going really well.

P2.1: And that’s strange!

P2.3: And I don’t want to…

P2.1: No, you don’t.

8

P3.2: You have to be very disciplined in the way you allocate your energy.

P3.6: Yes, yes.

P3.2: And you know that’s really a long process.

P3.5: Yes. Safeguarding your energy level, that I find the most difficult.

P3.6: Right. I’d forgotten about that. Energy is finished, you can, you want a lot, but at a certain moment you just can’t anymore.