The rules

I am diagnosed with a chronic illness: rheumatoid arthritis. This means there is constantly something in my body that doesn’t’work like it should. And that will last my whole life long. There is also another kind of illness. The ordinary kind: having a cold, the flu, chicken pox. That all passes. After a week or maybe a few months you get better.

If you have the ordinary kind of illnes you’re expected to go to bed and, sometimes with the help of some pills, wait it out until you’ve completely recovered. When you’re chronically ill you can wait until the cows come home. They won’t and you won’t recover. The rules that apply when ordinarily ill don’t apply when chronically ill. What to do?

Bouncing back and forth

Now you can think “I’ve got a chronic disease. So I’m ill and rules do apply”. And see that as a reason to stay at home, sit on the couch and wait, maybe until somebody comes and visits. That doesn’t make a good life as far as I’m concerned. You can also think “I’m chronically ill but I’m okay”. That may motivate you to go to work, continue your leisure activities, go outdoors or on holiday. And the pain and fatigue, well….that’s bearable. At least, that’s what you say. Because of your chronic illness one day you can take part in the normal day to day activities, but not the next. You aren’t healthy, however hard you try to fake it. You keep bouncing back and forth between being able to and not being able to, between being chronically ill and acting healthy.

That can be very confusing. No wonder people sometimes don’t understand your seemingly whimsical behavior. Don’t resent them for that. They know all about the rules that go with being ordinarily ill. The general rules about how to behave when chronically ill are obscure to them. Those general rules may not even exist. Being a chronically ill person you make your own rules. Day in and day out.

(written August 2010, translated May 2019)

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