At first, I thought I should write a philosophical article about the sense and nonsense of my disease. But then I decided to write about my life, how I found a diagnosis, and how I deal with it. If you prefer something philosophical, you can read the essay by Albert Camus “The Myth of Sisyphus”. With an illness, you feel similar to Sisyphus: one day you have rolled the rock almost to the top, and the next day the boulder rolls over you and down towards the valley again.
About 20 years ago, I was working in a retirement home and I remember a conversation with a resident when she said, “You see, I get up every morning and I’m in pain. But I am happy about every new day and being able to get up.” At the time, I thought that it must be terrible, to be in pain every day and know that it is not going to stop.
Now I am in a similar position, feeling a few decades away from entering a retirement home myself. How did this happen? Even several years before the diagnosis, which was ultimately made in 2020, I was often tired and quickly exhausted. I blamed pain in my foot, knee, and shoulder joints on my excess weight and poor posture. My fingers became discolored in the cold and during times of stress. First, they turned pale, then blue, and then they returned to normal.
“Walking was, and still is, painful and exhausting.”
When my wrists finally started to hurt as well, I could no longer find an adequate excuse. That was when I went to see my family doctor. She referred me to a rheumatologist in our hospital, who arranged for a wide range of examinations in various specialist areas.
After some time, mixed connective tissue disease became my new “emotive word”. I also added the tongue twister dermatomyositis, as well as Raynaud’s disease, to my vocabulary. And what does a modern person do in the digital age with all these new terms? Of course, they look up their diagnosis on Mr. Google. Not a bad idea if you can reach out to your doctor with questions and if you do not panic so quickly. Because on your search, questions will inevitably arise. And you are well advised to discuss them with a real person.
Medication can help a lot with this disease. At the beginning, my muscles deteriorated relatively quickly. I could hardly get up from sitting or lying down, and opening bottles and doors became a challenge. Walking was, and still is, painful and exhausting. However, with the medications, I can get up better again, open doors, and just go about my daily life more or less normally. I think that I have also been able to make progress thanks to the fact that the doctors reacted so quickly and the therapy started so soon. The therapy, which is now almost 10 tablets a day, includes an immunosuppressant, cortisone, and an anti-malarial drug (probably the most important ones). This is my very own chemical trinity.
“I am always amazed at my hands when Raynaud’s disease strikes”
Admittedly, at the beginning, when the muscles were beginning to show signs of giving up the ghost, I already saw myself in a wheelchair. I saw all my chances being lost and I panicked a bit now and then. But my family and friends have always been a good support. The daily walks with our little dog keep me moving and provide mental balance as well. I also do moderate strength training in order to keep the strength I have.
I have learned a lot about the human body. This whole thing would be very exciting and interesting if it were not so limiting and painful. It is unbelievable what the body does. I am always amazed at my hands when Raynaud’s disease strikes, in terms of the colors.
Social media opens great networking opportunities for people with rare diseases.
Thanks to Instagram I’ve learned about other sufferers and can learn quite a few things about how others manage their daily lives. Many institutions offer help as well. First and foremost, I would like to thank the Global Autoimmune Institute. They provide helpful information, including the Autoimmune & Chronic Illness Toolkit. In our region of Switzerland, the “Rheumaliga Schweiz”, for example, offers help in various forms.
Finally, I would like to say that you should not lose hope. It is worth fighting even if the road is rocky. I stick to the statement of the elderly woman from the retirement home: “I am happy about every new day”.
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.