”I want to be able to do what I want”
Linda Gunnarsson was 20 years old when she was diagnosed with rheumatoid arthritis. Today, 25 years later, she has learned a greater acceptance of her own limitations. At the same time, it is still important not to let the disease control her life.
How is everyday life with RA for you?
Thanks to good medication, my everyday life is probably not much different from everyone else’s. I can do most things, though sometimes I have to make adjustments. I do not lift heavy objects and do not do much hard manual work. In those periods when my medication is not working optimally, my life is more affected. Then the pain in the joints prevents me from doing a lot of activities. I have had a lot of fatigue and resting doesn’t help with the fatigue produced by joint inflammation.
What makes a good day or a bad day for you?
I have a smooth course when it comes to my RA, so my disease activity doesn’t fluctuate much. Like everyone else, I still have good and bad days, for example, my symptoms are partly affected by the weather. A cold November day with low pressure will often leave me feeling tired and stiff. On days like that, it's nice to settle down on the sofa and watch a good movie, have a cup of coffee and keep myself to myself.
Good days I have a lot of energy, start projects, fix things at home and I want to meet people.
What have you learned along the way?
At the beginning of the disease, I was only 20 years old and it was a fast and aggressive process. At that time I had many thoughts about why it had chosen me. It felt unfair and was very difficult to accept. After all, I was the girl who was always active in sports, played football, swam, traveled, played piano and did a lot in my life. I wanted to do more than ‘just be’.
It has taken many years but over time I have developed a greater humility about my own and other people’s limitations. I have come to realize that life is not a competition to be won, but something to be lived. Even illness is an experience, and not always a negative one. At the same time, I have refused to let the disease control my life.
I have largely done what I have wanted with some adjustments, sometimes at the expense of more pain and knowing that it may have affected my joints. It is difficult to know if I would have behaved any differently if I knew then what I know now, but I think we all do the best we can at the time.
Has your condition affected your outlook on life?
It is important for me to be able to do what I want, and for my RA to restrict or control me as little as possible. At the same time, I have tried to listen to what the body needs, to take care of myself so I can keep on going. Exercise is very important. This is something I want to get higher up on my list of priorities, but I also need to think about recovery.
What does acceptance mean to you?
It is a recurring issue over the years: how I can learn to accept my condition. I have not fully accepted my illness, but I am a lot closer than I was before. I realize that it is OK to take a rest, to recover and not feel like I have to perform constantly. But I have never identified myself according to my illness: It has never been the first thing I tell people about myself, whether new people I have just met or at job interviews. I'm not ashamed of my rheumatism, it's just not what I want to focus on first.
After some X-ray examinations, I can see in black and white how the body has changed, wich can lead to a bit of a dip in my mood. But then I try to think about how much I can manage despite those X-ray results. After all, I live a very ordinary life and I've always been able to do what I wanted.
What advice would you give to someone living with RA?
Be kind to your body! By that I mean don’t force yourself to do things out of a sense of duty and then not allow time for your body to recover. As a young person, you might be afraid to take sick leave, to talk about treatment with the healthcare system or ask for help in order to manage things better.