"Life's too short to feel bad if you can feel good"
For Carin Melchert, the period before her rheumatoid arthritis (RA) diagnosis was a long and tiring time. Today, though, she feels better – and during her journey she has gained an increased awareness of what she needs in order to feel good, and the importance of prioritizing just that in life.
Who are you?
My name is Carin Melchert, I am 53 years old and I live in Järup, a small town between Lund and Malmö in the South of Sweden. I work as an Art Director at a communications agency and I have my own business. My own business allows me to control more of my time and take breaks as I wish. It's a fantastic, fun profession that I hope to be able to continue with.
How was it when you got your diagnosis?
The symptoms started to appear when I was 44 years old.. I had many explanations of my own for what could be wrong: I had sore wrists because I was driving a lot, or the pain in my feet was due to bad shoes.
After a while, I developed swollen fingers and went to the health center. They didn’t take any samples and I was told that it was probably osteoarthritis, the beginning of menopause and simply "age". I went there many times and always got the same answer. I was also told it could be something mental.
I started googling, it felt like I was going crazy. I was so incredibly tired too, almost asleep on my feet. On the weekends I just wanted to rest all the time. The pain got even worse, which made me seek emergency care. I had a fever and was generally pretty ill. I had various knots in my wrists and hands.
It affected me very much mentally. In the end, my husband and I decided we would use the private health insurance we had. I went to a hand surgeon who said I needed surgery, but that he also guessed that I had a rheumatic disease. He took blood samples and also sent some tissue from the operation for analysis.
Shortly afterwards, the test results came. I had to go to a rheumatologist where I was told I had rheumatoid arthritis (RA). The X-rays showed I had suffered injuries to my hands and wrists due to the fact that I had been suffering from my problems for 4 years.
How did it feel to get the diagnosis?
I had suspected that I had RA, so once I got the message, it felt, in a way, like a strange restoration. They had dismissed me as just another middle-aged woman with ailments. It's so stereotypical that I was dismissed as semi-hysterical. That's also why I want to tell my story. There may be a lot of people out there who have not received help and are being dismissed in the same way, and who actually have something rheumatic.
I became very angry, sad and shocked. I had had to manage for almost four years without a diagnosis, getting skeletal injuries to my hands and feet, just because doctors did not take me seriously. Do not even bother to take an RA test. I felt so stupid. If you find RA early, you can slow down the process and the damage will be less. I think you could say I got depressed.
How was everyday life after the diagnosis?
Everyday life was tough before my diagnosis. My private life had and gone downhill and gotten smaller before I received my diagnosis. I was so tired, and life felt very boring. I had stopped going to activities and meeting friends. My husband had to manage a lot.
At the rheumatologist I received good treatment, I felt seen. It felt like I was getting into a safe place. Although I got a lot of help, life became much busier, with a lot of things to keep track of, blood tests and medications. I also had some side effects from the drugs. Despite that and the shock of the whole situation, that was where life turned upwards again. It took a while but I started to feel the difference and became more alert.
What was important to you during this time?
The most important thing was the support I had from my family and also from work. I was not on sick leave at the beginning, but rather I was determined that everything could carry on as usual. Then the doctor said, "Now Carin, you have to start thinking about yourself." So I went on sick leave and it was very nice to rest. I discovered how tired I was, because my body had been struggling for so long. It was a good decision to have that break and take time to recover.
Has there been any difference after your diagnosis?
Yes, I must say there has been a very big difference. I have read a lot about my diagnosis, realized that I get too tired to do everything I want, but I can also choose what I want to do the most. I have become more focused on meeting people and doing things that are fun for me and my family.
I have a different respect for time, and try to make the most of the good times. Life is too short to feel bad if you can feel good. I've done things I might not have done otherwise. That's a good thing. I exercise more, which maybe I would not have done otherwise. I try to take care of myself more than ever.
It may sound naive, but my RA diagnosis has meant I live a healthier life. I have a different view of things like possessions and prestige. If you don’t have good health, you don’t have anything. I have always had a hard time saying “no” before, but as soon as this happened I started trying it out, because I simply could not say “yes” all the time. And it went well, it was not so difficult in the end. It became a relief to be able to say “no” to things.
Would you say you have got to know your RA?
Yes, I think I have come a long way towards knowing my RA. In general, I do not feel scared anymore. Sure, it slows me down sometimes, but I don’t let it make me anxious I live with it but it has not taken over. I feel that I have gained an increased awareness of myself and my surroundings. I feel like I'm in a good place. I feel that I am happy now, which I wasn’t before.
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