"I have health, it just happens that I have a chronic disease"
When Kim Nilke Nordlund was 19 years old, she redeveloped symptoms of JIA, which she had when she was little. Gradually, she has developed strategies to make everyday life work better for her.
Who are you?
I’m Kim Nilke Nordlund, 31 years old, originally from Gothenburg but I have lived in Stockholm for six years. I work as a general secretary at Unga Reumatiker. I myself have a rheumatic disease, juvenile idiopathic arthritis or JIA. In my free time I like to dance, watch hockey, cuddle with my cats and sail.
How was it growing up with JIA?
I was very small when I got my diagnosis, only about two or three years old. For me, childhood was pretty much okay. I felt I was spared from serious problems with my illness. I could always take part in sports in school, and I played floorball, football, sailed and swam. But it is clear that there were problems. In retrospect, I can see it from a different perspective, but I do not think I felt that way then. Working where I work today has made me reflect on my upbringing and what it was actually like to grow up with a rheumatic disease.
What happened next?
I felt so good being discharged from the pediatric rheumatologist in my early teens, when I was considered healthy. But when I became a student and moved to Paris, I suddenly became very ill. I did not really understand what the problem was, but I was sure it had something to do with rheumatism.
I could not walk, not even between two metro stations. I had no energy and slept an unnatural amount just so I was able to study. But it was only really when my mother visited and said " My God, what has happened to you?" that I understood this was something really serious. When I returned to Sweden, it was a process to get back into care, because I had not been transferred from a pediatric to an adult clinic. But I got help to get directly to the adult rheumatologist and did not have to take the turn around in primary care to get a referral. And once there, I got a good doctor and started trying different types of drug treatments.
I do not remember my first semester at university because I was so ill with rheumatism. I could manage the pain and the difficulty of walking with various forms of adjustment. But the overwhelming fatigue, on the other hand, was what had the biggest impact on my life.
After trying different treatments, we eventually found one that suited me. I finally became myself again, almost like a new human being. I could sleep well and my energy levels increased. I remember how my mother reacted to how fast I could get out of bed in the morning, as soon as the alarm clock rang. I had not been able to do that since I moved home from Paris.
How are you today?
I would probably say that I feel good today. I have a very understanding workplace, for obvious reasons, at Unga Reumatiker, but mainly I think it's about me becoming much kinder to myself. I have found strategies that make my everyday life work much better than before. Back then it was like I needed to prove myself, but now I feel like I'm really okay just the way I am. Of course, I can push myself through a lot, but I am much more accepting of my way of looking at things. I might think that "today I need to rest”, or “today I need to take this morning meeting by phone because I couldn’t get out of bed as early as I wanted to" and I do not see it as a failure.
How come you can use these strategies more than you used to?
I have probably just become older and wiser. But most importantly I am in a completely different context. I have met other people who I know understand what I am going through, and from whom I can learn, with whom I can brainstorm ideas. That has been invaluable in understanding my illness. I have had this diagnosis for most of my life, but it wasn’t until I started getting involved in Young Rheumatologists that I really understood what rheumatism is. The only thing I really knew before was basically that it was a joint disease. Now I am in a place with a network of people who have their own experiences, and where we can learn from each other.
What was missing before?
I think it's about being kind to yourself. Having a chronic illness has a fundamental effect on your life: it’s a big deal. And I never really dealt with that when I was a kid. I was told that almost everyone with childhood rheumatism gets better, which meant I saw an end date. So when it came back when I was 19, I really needed to process and deal with it. "My God, I'll actually have a disease my whole life," I thought. I ended up in a phase of denial that lasted longer than it should have done. It felt like a failure. If almost everyone else gets well, why not me? I think I was a bit misinformed by my care when I was younger. They don’t say those sorts of things to children today, but it meant I was not prepared.
My response when I was a young adult and realized I had a chronic diagnosis was that I would prove that it would not affect me at all. I wanted to prove it to everyone, or maybe to someone, but to whom I don’t really know. But today I think in a different way. I do not have to prove myself anymore.
Be kind to yourself. You do not have to prove anything to anyone. Put yourself first and take care of your body and your mind. You are important!
Get a good sick friend. Be sure to meet someone. A mentor, friend, anyone who has been or is going through the same thing. Preferably someone who has made the same journey before you.
What would you say has made a difference?
What has probably made the biggest difference in my life is that I am surrounded by people who actually understand. That's probably what made the biggest difference in my life: I am not alone. It is important to understand that when it comes to a chronic diagnosis, it is not just about being in pain. It's a lot of emotions. For me, it has been nice to know that the feelings I have and have had are not weird. It is possible to process them and it is possible to feel good. I would say that I feel great today. "I have health, it just happens that I have a chronic disease".