I don’t know when I first came across the word painsomnia. It was probably as a result of asking Google whether whatever new pain I was experiencing was a common side effect to the new medication I had been prescribed or was it a symptom in its own right. Doctors should warn their chronically ill patients about the amount of time they will spend trying to figure out the difference between the two.
Painsomnia is often used by people living with chronic pain to describe the inability to sleep caused by being in pain. It’s not a medical term, but there is something about it that goes deeper than simply using the words pain and insomnia so I am not surprised it has emerged from the chronic illness and spoonie communities.
Sometimes having a word that helps you feel seen is enough. Sometimes words are all we have. Sometimes the words one person uses won’t resonate with another. Spoonie is that term for me. I have used it because I know people understand it, but the Spoon Theory never really worked for me.
Christine Miserandino’s Spoon Theory explains that people with chronic illnesses (Lupus in Miserandino’s case) have a finite amount of spoons whereas those who aren’t ill have an unlimited supply of spoons. The everyday things people take for granted, such as showering, may completely deplete a chronically ill person’s supply of spoons. The result is that we are able to do less because our energy levels are lower and we need time to recover often from basic tasks.
My issue with this is the assumption that everyone has spoons to begin with.
It is strange the things we do because we think they will make life easier for other people. This is true for so many of us, women especially, but I think it is particularly true for those of us living with chronic illness.
But then, there are only so many times and in so many ways you can tell friends, family or acquaintances that having your symptoms under control does not mean they have gone away completely.