My illness started - actually even as a child I was aware something wasn't quite right but it was a long way down the line, eight years ago, when I was told… Well, actually until somebody gave my illness a name, telling me I have psoriatic arthritis.
It was really bad to begin with, as I didn’t know… All my limbs were hurting. I had psoriasis all over my skin and couldn’t work it out. What does that mean for me. There were also lots of activities I couldn’t do anymore. After work I’d come home and do nothing else. I didn’t meet up with friends either. I didn’t have any leisure time as such. I always had to think: “How am I doing?” “What can I do?” “What can I take?”
It literally took me three or four years before I could ever allow myself to say something like: “Well, I’m not doing great”. My skin was affected from my toenails to my hands, my back, my head… That was particularly badly affected. At the beginning I was also worried that I’d lose my hair; more and more of it was falling out, also because of the medications. And my nails, I was worried about losing my nails too. At one stage, they had to remove the nails from my fingers twice as they weren’t sure what it was. They always suspected it was fungal, that I had some kind of fungal problem. And on my big toe as well, but it wasn’t true. And I was lucky because a dermatologist referred me to a rheumatologist – and I was actually lucky that happened. The pain affected my life such that I had to reduce my work. I had to go from 80% time down to 60%. And I needed help to do that, as I just couldn’t accept it.
‘I had to be admitted for two weeks to the rheumatology hospital – now I can’t even talk anymore. Then I also had to go to a rehabilitation clinic, where they helped me in a way too. If you can’t work 100% full-time, it doesn’t mean that you’re nothing, no, you’re still somebody. So what shook me up was: I still have my son, and I wanted to be there for him – Sorry… And actually my whole family. They make my life worth living – even with the pain, I think, it’ll be OK. I mean, they’re all there for me. Yes, that really shook me up. I can do it, I can manage this! And now I’m doing better, I know it’ll all be OK, but I still have to motivate myself every day, yes [sighs].
What I’d like to say to other patients is to not give up, definitely don’t give up and tell a doctor: “I don’t want this or this… ” Have the courage to say what you’d prefer and what hasn’t worked properly. You must find the courage to say: “we need to change something here”.