A cosmos of chronic illness

When I became a chronic illness patient after my diagnosis,  it took me a while to realize I was part of the „spoonie community“. I found out that such diseases rarely come alone. Most of the patients seem to have a whole catalogue of afflictions. I don’t. I have CLL and my immune system does not really deserve its name, but that’s it. However, once you are a spoonie, chronic health issues seem to pop up everywhere.

There are some ailments people tend to be more open about like neurodermitis and asthma. Recurring depression is often labelled as “burn-out syndrom” as being overworked seems to be a more acceptable condition in modern society than being melancholic. People who suffer from Morbus Crohn, an inflammatory bowel disease, are straightforward about their suffering when I tell them about myself. Otherwise, it is pretty taboo. I have only listed a few of the many illnesses I am surrounded by. As a matter of fact, I could go on forever. Ever since I started writing this blog people around me have come out of their closet with various health problems.

And I don’t have to look far: In my huge extended family there is a whole range of maladies from A as in arthritis to Z as in zoster. Being immunosuppressed is hard for me sometimes, but sharing my life with and caring for my beloved ones who suffer from dementia, Morbus Bechterew, cardiovascular disease, Lyme Disease, rheumatism, skin cancer, prostate cancer or who struggle with obesity, ADHD, migraine, sleeping disorders, colitis ulcerosa is even harder. My CLL is not at the center of our family health issues, but rather part of a huge mosaic.

Watching my kids go through puberty is much more complicated than watching my symptoms, I must admit. But having someone at my side who suffers from chronic pain is still worse. Those around me who experience chronic pain always stress how much it affects their daily life and even their personality. They say that their character  is re-shaped by their pain, which I find frightening. Studies show that cancer patients who suffer from depression as well consider mental illness a lot more straining. Unfortunately, they often go hand in hand.

The word “cancer” still strikes a chord of fear in most of us, although it is not necessarily the death sentence it used to be. Forget it. It’s not all about cancer. I feel with you, if your life is affected by so-called minor ailments. Why? If you have ever tried to lead a conference when having a migraine or to go through an important negotiation while suffering from diarrhea, you probably would not call them “minor” anymore. My heart goes out to people who are lost in the black hole of depression, to those who are experiencing chronic pain day by day and those whose are losing their memory and mobility are slowly but surely.

We cannot measure the amount of suffering another person has to endure. But we can stop comparing and show empathy. Because at the end of the day, we are all in the same boat – sometimes it is rockier on one side and sometimes on the other.

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