I thought I’d share some tips with you on dealing with a Person with Chronic Pain (PwCP).
1. A PwCP may seem unreliable to others (heck, we can’t even count on ourselves). When we’re feeling good, we plan and promise (and genuinely mean it); but when the pain hits, we compromise, adjust or even cancel, because we simply can’t manage through the pain.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it and even harder to explain.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. You may have to repeat a request or write things down for a PwCP. Don’t take it personally, or think that they are stupid.
4. The senses can overload for a PwCP. For example, noises that wouldn’t normally bother you can be overwhelming to us, especially if the sound is repetitious or high pitched. Certain sounds that bother me personally include metal against metal (i.e.: two forks stuck together), the smoothie maker, or repetitious sounds I can’t identify.
5. We don’t have an abundance of patience when it comes to things like waiting in a long line or listening to a long drawn-out conversation. Our pain levels are usually fluctuating and we mostly want to get back to our “safe places”, such as the home. PwCP don’t want to be seen as rude, ever…but we may come across that way if we seem in a rush to get away.
6. PwCP need and value a support system, so this next point is really difficult. Please don’t ask “how are you” unless you are genuinely prepared to listen to the answer. Chances are, we’re only going to answer you with “fine” anyways, to save you from how we’re really feeling.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like loading the dishwasher, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. There’s no way of knowing when this will happen. We’re not being lazy when something doesn’t get done…we may just be trying to get over a hurdle.
8. Pain can come on fairly quickly and unexpectedly. Sometimes it lasts, and sometimes it abates after a short rest. A PwCP may appear perfectly fine one moment and look like they’re at death’s door the next. It doesn’t take much to wear us out – but often, when we’re in the middle of something fun and dear to our heart, we will continue on long past the point we should have stopped because it makes us feel normal.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the PwCP knows there is a refuge if needed. A PwCP may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a PwCP. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. Just know that when we say we hurt…we hurt.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That doesn’t reduce the pain, – it only reduces our ability to give it a label. Having you believe us is still the most important thing that we need to feel validated.
I hope this helps a bit to give some understanding of how PwCP work. If you have questions or comments, I’m happy to reply. Thanks for reading and as always…
there is always hope