When the Worst Thing About Chronic Illness Is Everything Else

My final exams at university were more than 20 years ago, but I remember the row about the beds quite vividly. The maintenance department went into some of our rooms without warning and created some mess by installing new beds. It really was a minor bit of stress — I think I had tidied it up within about 10 minutes and I did get a nicer mattress out of it — but, like all the other students facing finals, I was furious, and we had a collective rant at the Dean.

This was not regarded as particularly unusual at the time, as we were preparing for final exams, and everyone understood that even minor  annoyances at such a time can cause over-reactions. However, it was my first introduction to the principle of displacement stress. Since then, I’ve experienced it when we needed a plumber a couple of days before our wedding, and when doing anything at all with a small baby in tow, and so on. When you have a lot going on, you can focus on the main task fairly well, but other annoyances that would usually be pretty minor are much  tougher to deal with. And thus your reaction to them can be spectacularly disproportionate.

If you have a chronic illness, you essentially always have a lot on your plate. You may not look very busy, and with employment often difficult to manage, you may indeed have plenty of hours of sitting in your chair. People may be wondering why you don’t manage to fit in more, especially if you complain of being bored. (Incidentally, chronic illness can be very boring: you can have a million ways of keeping yourself entertained, but if  you don’t feel very well, watching “Friends” on Netflix may be all you can manage. I sometimes wonder how I haven’t managed to read more  demanding novels or do a master’s degree since I stopped teaching, but if you too are constantly taking strong painkillers, you may understand that a straightforward murder mystery is about all you can follow.)

So, if you are in a permanent state of having a lot of unseen things to deal with, your reaction to everything else is erratic. On a good day, I might agree to help out at something in the village, read at my daughter’s school or run an unexpected errand. On a bad day, however, the slightest thing may feel impossible. More usually, my day will be somewhere in the middle, so a small change may or may not work out.

Whether or not I can do things despite my very small petrol tank is a constant calculation. It may be that I can happily read at school on Thursday instead of Wednesday. Or it may be that this will overtire me, because I have a couple of other things to do on Thursday, so I’ll feel rubbish on Friday, and this will mean I can’t go to that meeting, so the whole of the PTA stuff I’m doing will crash down, for example. If your train is late, I  will be sitting outside waiting to pick you up for longer, and that will set off my lower back, so I’ll have to do something easier for dinner… and so  on.

It can be that the most minor of things leads to a crisis. Ending up sitting on a hard chair somewhere having forgotten my cushion can quite easily mess up the next 24 hours. Deciding to lift something heavy out of the car can leave me feeling horrible later that week, but it can be weeks before I can have help with that particular errand. Sometimes those of us with chronic illness will just decide to do something spontaneous, and you should be very grateful if we decide to do it with you, because there may well be a pain bill to pay later.

Living with pain is basically about always having an ongoing crisis. After a while, you get used to dealing with the pain, which is not to say it stops hurting, but you take it as a given. How much it interferes with everything else, however, is something you must work out afresh every single day.

Follow this journey on the author’s blog.