The social consequences of an incurable disease are so gross

Once again. I met Andrea at a coffee shop and she doesn’t show up. Even if she texted an hour ago that she’s okay today, she’d make it. I know it has nothing to do with me. I know she’d love nothing more than to have coffee with me right now. Yet I am ugly. Not on her. To this damn disease who took my trusty, loyal, cheerful friend from me.

No, luckily Andrea isn’t dead. But she is different than she was. She used to be in pain more or less every day. Before she had a disease that can’t be seen on her face, but will never go away.

According to the Federal Statistical Office, 2.2 million people in Switzerland suffer from an incurable disease. The most common chronic diseases are allergies, followed by osteoarthritis/arthritis. Andrea also has a rheumatic disease. Her diagnosis is axial spondyloarthritis, more commonly known as ankylosing spondylitis. Simply put, it is a chronic inflammation of the spine, which causes bone growth and in the worst case can lead to stiffening of the spine. The consequences are pain in the back, chest and neck. In addition, other joints such as shoulders, knees or tendons can become inflamed. According to estimates by Rheumaliga Schweiz, more than 70,000 people in our country have ankylosing spondylitis. However, very few people are correctly diagnosed as it takes an average of six years from the first symptoms to diagnosis.

Ten years ago, in her mid-thirties, Andrea also had permanent joint pain. No one thought of a rheumatic disease, not even herself. Neither do the doctors. Who has rheumatism at this age? She was diagnosed five years ago. There have been long mornings when she was in so much pain that she couldn’t even get up. And days when she just cried, or yelled – yelled at the kids too – or both. To this day I find it admirable that their marriage lasted.

The diagnosis was on the one hand a relief – we finally knew what was going on – on the other it was a shock. Not just for Andrea, but for everyone around her, including me. My fun, boisterous, enterprising friend has an incurable disease. She will never get better. How the course would develop was in the stars and still is. The disease can be controlled to some extent with medication. But how long? And what are the consequences?

Rheumatic diseases are usually treated with low-dose chemotherapy. Andrea gives herself the injections, timed them to get everything ready for the next 48 hours when she just crawls on the floor and pukes all over the bathroom. When she gets better, she goes to the gym or runs or even rides a bike – As much movement as possible prevents stiffening. But it’s cost her every time since her 12-year-old daughter said in tears that someone saw her on the bike and told her, “Your mom is cycling, she’s not as sick as she always pretends.”

This part of her illness often hurts Andrea more than the pain itself: the social consequences. The exclusion, also in one’s own family, albeit involuntary. Her husband goes on vacations and excursions alone with their two daughters. Long journeys, prolonged sitting or standing or walking have become impossible for them. There are only a few friends left. Because you can’t do anything big with Andrea anymore, and you get transferred every second time.

I too have to keep reminding myself that the “normal” rules of friendship don’t apply here. That I invest more than she does because she can’t invest anymore. And that the line between helpfulness and compassion is sometimes very thin. My offers to cook, run errands, or take care of the kids are often seen as compassion, and maybe even a little, though unconsciously, it is.

When we manage to see each other, three quarters of the conversation revolves around Andrea’s health. Also not exactly what makes a friendship sexy. Still, I don’t want to miss them. Not only because despite everything the humorous, witty Andrea flashes through it again and again, but also because I learned something valuable from her: some things cannot be changed. But you can make the best of what is, today, not tomorrow. Or, as Andrea puts it, “Every minute I feel good is worth not worrying about it or cleaning it.”

Do you have a chronic illness that has changed your life? Or do you know someone who struggles with this? How do you deal with it? Share your experiences and thoughts in the comment columns.

source: watson