"What, you're not sick, are you?"
I know the look. I’ve seen it several times when I’ve let it slip that I have RA. “Oh, I never knew someone like you could have rheumatism.”
I’m Hanna Blyckert. I work as a health educator at Elsa, and I was diagnosed with rheumatoid arthritis in my 20s, which is almost 10 years ago now. When I tell someone about my RA diagnosis, I have often noticed that people have difficulty knowing how to respond or react. The comments can include: "Wow, I could never have believed that!" Or: "So sad to hear Hanna, but you still feel pretty good, don't you?" How do you answer that? It may be tricky, but I try to remember that it is difficult for someone who does not have RA to know what it is like to have a chronic diagnosis.
I think many people who have not met someone with RA or a similar condition often think that it is a disease that only affects "old ladies" and that you can recognize people who are sick from their crooked fingers. Sure, some of us, maybe some of the people reading this, are older and maybe have crooked fingers. But I promise, there are more of us who have RA. And it does not have to be visible on the outside. We live just like other people, except that sometimes we may need to think about things that someone who is not sick would never think about. So how do we do it? Can we enjoy life the way we want to while we keep a chronic illness in our back pocket? This is how I do it!
To (need to) choose and evaluate
I did not want to get my disease. It's been tough and sometimes still is tough. My mother often uses the phrase "crisis and development". Today, I understand what she means. These have been many crises in some ways, which have actually contributed to me developing both abilities and strategies to handle things that I might never have had to do otherwise. It still makes me a little happy, because I appreciate what I have managed to achieve.
Of course, I'm not entirely sure, but I think RA has made me more careful and thoughtful in how I plan my time and how I prioritize in life. It's not always fun but it also makes me more aware of what I do with my time. I am thorough, and I have gained a pretty good insight into what I need. I somehow know what recovery I will need to have as many good days as possible. I have many (many) times had to say to myself: Hanna, now you have done it again, you have taken on more things than you can manage right now. I get better at stopping, and I pat myself on the back for that - because it is difficult and challenging when you want to do everything.
One of my biggest weapons for maintaining physical and mental health is to be physically active in the way I like. I love to get my body working, get the sweat flowing and enjoy the feeling of a "mental shower" when my pulse is high and my heart is pumping oxygen to my struggling muscles. Although I know that many people usually say that "the most beautiful feeling is after the workout", I actually often enjoy it while I am working out. I train because I have realized that I both feel better and also it helps me cope with everyday life in a different way. I automatically become happier, more energetic and I thrive in myself.
The blanket over your head
I always try to do something, even on the days I do not want to. Of course, there are times when the quilt actually literally ends up over my head and I munch on chocolate or popcorn and just allow myself to be a little down for a while. However, I have made the decision always to try to make to be active. Even if it is, for example, just going for a walk and listening to podcasts and ending with a long hot shower and then watching your favorite series and eating grapes. It may sound banal, but when I do this, I win a little over what is making me sad.
“When I start to feel down because of pain or negative thoughts, I try to make an ACTIVE decision to do something. It’s a simple sum: physical activity + reward = feel a little better. ”
My way of making the worst days a little better
On those bad days, I have a clear method that works for me. I have done this so often that it has become like a mantra:
I'm listen to what I'm feeling right now
I accept that it is hard / it hurts
I ask the question: What can I do to help myself?
I discuss with myself (emotions / reason / experience)
Decision. I decide on something
I try to implement what I have decided
I praise myself for what I was able to do today
I almost talk to myself as if I was a child I am looking after. That I know better than the feeling I carry at the moment. I accept the feeling and really get to feel that way, then I do what I have to do. This may sound crazy to you, but it really is something that works for me. Can you feel this way sometimes? What do you usually do then?