The treatment of my arthritis has affected my hopes for the future

Author: Charlotte Secher Jensen

The puzzle

I have always seen my arthritis as a very large puzzle. A puzzling puzzle where it is always about finding the right pieces at the right time, even if it can take a long time to find the right piece. Because the worst thing I can do is push a piece down in the wrong place, where it doesn't belong. The wrong pieces can have consequences for the future – for my future, my life and for my arthritis.

Almost 18 years ago, I suddenly found myself with a completely new, but unassembled game, called rheumatoid arthritis. First, I found the corners. The easiest pieces I could find. I sought help from my general practitioner, who quickly sent me on to one of the most important pieces – namely the rheumatologists. A rheumatologist once told me that he felt a bit like a detective every time he had to investigate a patient with some form of arthritis. That arthritis is a bit like a puzzle to understand. A riddle for both the arthritis patient, but also for the rheumatologist, and when he manages to find the answer to the riddle – the correct arthritis diagnosis, it is like putting in the last magic piece. The feeling is indescribable.

I have met incredibly skilled and committed rheumatologists who have given me hope in the present and in the future. In the periods when the arthritis has filled me with an incredible amount, when I have hardly had the energy to continue putting the puzzle together and have been close to giving up, they have helped me identify which wrong pieces needed to be removed, found new pieces and whispered supportively, “try one more time – try this one instead.” Although I did not necessarily think that it was luck with a new medication or another blockade, I had an experience in the past that they had usually helped put together a similar puzzle before, and their experience could help me here in the present. So I accepted their help.

Pieces that don't quite fit

A few years ago I had reached the point where the many hours sitting quietly in front of the puzzle had given me a little too many kilos and thoughts to lug around. It affected the pieces. They didn't fit properly, had become a little worn around the edges and although life with arthritis was generally okay, I had a feeling that a piece or two was missing. I started looking for them. I got my GP to help me. She helped me apply for a stay at Sano/arthritis sanatorium.

There I got an incredible amount of help to look and feel properly. I had a lot of pieces turned. Got them straightened around the edges. Noticed both sides. I felt seen, heard, listened to, supported and understood in the process, and it was as if it was both the mental and physical pieces that fell into place better for me after all those years.

The box the puzzle came in was turned upside down during my stay, and it affected me so much that I looked at the game in a completely different way when I got home. I saw the whole picture on the front of the box and with a renewed view of the pieces that had not yet found their place, and had an easier time accepting the pieces that were in the perfect place.

For the next 6 months I struggled with the puzzle, and more pieces slowly fell into place for me. 20 kg lighter with more peace of mind, I walked through the door of Sano again. I was and still am deeply grateful for the support and help I received to find the pieces myself and get them put in place correctly. The help I received with finding the exercise piece, the healthy diet piece and the one with keeping my thoughts in the present helped me with the past and influenced me to look brighter at the future.

When things don't go as planned

So when I lost the puzzle last year, I cried. I was disappointed and annoyed that I felt like I was starting over again, that I had to put it together again, but I still didn't. Some of the pieces were still together, and this time I didn't feel like giving up, despite the swollen joints and the pain giving me new challenges in putting the pieces together. Most of all, the exercise piece was really hard to fit back into the puzzle, even though I knew the right location. I didn't lose hope in the same way. I found the strength to pick up the game, dry my eyes, and ask for help to put the pieces back together. Find them all and see the whole thing again.

So when I stood there with the partially broken puzzle at the rheumatologist, he found a few corners, and together we put one edge back together. I agreed to a different type of biological medicine. Actually, something I thought for many years belonged to another game and not mine. But now I could see that it was an important piece of the puzzle. A necessary piece in my life with my arthritis.

Hope to shape the future

The indescribable, time-consuming, unpredictable, enigmatic, half-assembled big puzzle called arthritis. I will probably never be able to put it all together, or place the last magic piece right there in the middle. I will certainly never fully understand the rules of the game. The game that has had major consequences for my life so far and probably will in the future. Maybe I am not meant to understand it fully. But the puzzle with the many pieces, it has become a permanent part of my life, and I know for sure that I have the support, have found the strength and have the hope to shape the future.