Find your own strategies for feeling good!
Mindfulness on the commuter train, an hour in the stable with the horses or thinking of oneself instead of worrying about the cleaning. These are the strategies that make Jenny Christensson, Chief Patient Officer at Elsa, feel better. But sometimes it's all right just to snuggle up with a blanket and Netflix too.
Do you want to tell us about your work at Elsa?
I'm the Chief Patient Officer. It means I am the person with very big ears to the ground in terms of patients' needs and the dialogue we all have about this in society. I am the bridge between people living with RA and Elsa, all so that what we do at Elsa will be relevant for the people who will use the tools we create.
When did you develop RA?
It was the winter of 1994. I had studied at Karolinska Institutet and was doing my internship in Oslo. I had been home with my partner and was about to fly back to Oslo. I had made this journey so many times before, but this time my life would change radically. When I found my seat, I took off my shoes and was going to have breakfast. Nothing unusual so far, but when I tried to put on my shoes again, my feet had swelled so much that I couldn’t get the shoes on. So at 22, I got my first symptoms of what was then diagnosed as rheumatoid arthritis (RA), The journey since 1994 has been very tough at times, with nights sleeping at the dining table, a beloved daughter I could sometimes barely lift and relatives who had to dress me. But I have also developed a thicker skin and increased empathy. In addition, I have managed to continue riding and have participated in several Swedish dressage championships.
How do you feel about having a “chronic illness”?
Of course, it is not fun to have RA, which is a chronic disease. But it is important to accept it and turn it into a positive. I'm a different person than before I got sick. I look at other people in a different way. It may sound crazy, but I can see that the disease has also meant a lot of positives on a personal level. I choose to see my illness as a strength today.
What do you do to try to feel good?
I try not to dwell on my illness, and I do a lot of the things which make me feel good. An hour in the stable with the horses is often the best medicine for both body and soul. But sometimes I also allow myself to feel bad and rest, if that is what I need. My body decides. It is important to find ways to relate and cope with everyday life.
What is important for you to think about?
Thinking of myself! Doing what makes me feel good. I make demands on myself, but others should not do that. I try to scale everything down to what needs to be done and what I want to do myself. I will never do something because someone else demands it, or cook for a lot of people just because they’re there. It makes me sad to read about people who almost kill themselves cooking Christmas food. I will not make such demands on myself again. My energy is limited and I want it for things that make me happy.
Describe a typical day when you are in pain
I rarely wake up in pain, it usually develops during the day. A general feeling of illness is there all day on a bad day. I often feel cold so I shake and turn blue under my nails. With the frozen feeling comes the fatigue.
What do you usually do to make it feel a little better?
It is good to talk to those close to you about how it is. That’s how they can start to take your illness into account. It's ok to give up a bit: sometimes you just need a blanket and some Netflix. Sometimes everyone needs to stop and reflect, perhaps even more so for those living with chronic illness. Personally, I do not want people to ask about my illness. I do not want it to limit me or how others look at me. If I'm OK, I’m OK, if I'm not, there's a reason.
What advice would you give someone who has just had their diagnosis?
Read and try to understand what kind of illness you will be experiencing throughout your life. Find your own strategies for feeling as good as possible. Live for yourself and allow others to take care of you! Mindfulness is my lifesaver. Stress and tension make things worse, including the disease. I took the bull by the horns and trained as a mindfulness instructor. I felt this tool was something that worked for me and wanted to learn more. Being able to slow down my breathing in a short time and become relaxed reduces my pain and recharges my batteries. I can even use the time on the commuter train, I just plug in the headphones and listen. It does not require much time, and it only does good.