Today I have a guest post for you guys from a fellow blogger There is always hope
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 plans, 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. Machinery, car horns, fire alarms, certain types of music and whistles can all be triggers. 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. A PwCP doesn’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. A PwCP needs and values 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. Speaking of normal…
9. Normal is something we long for most of all, so don’t be surprised if you see us pushing on during a fun activity, or saying “I’m fine” when we’re obviously not. We know we’re going to pay the price for it later, but sometimes, just being in the moment is worth the pain we’re going to feel later. Let us decide when we’re willing to pay that price. Don’t treat us like babies and don’t chastise us either.
10. Knowing where a refuge is, such as a couch, a bed, or a comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the PwCP knows there is a place to rest if needed. A PwCP may not want to go anywhere that has no refuge (e.g.no place to sit or lie down). This is especially true for outdoor events. Even if you can only bring a blanket with you, it’s enough someone can sit down or lay down for even a few minutes to rest.
11. 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 or useless in the face of encroaching pain.
12. 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
13. 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.
14. Help me with daily responsibilities. Ask me if there are any chores I need assistance with. Offer to take me out so I can get out of the house. Invite me to lunch, or just come on over to keep me company for a while. My life is pretty lonely because I’m often housebound, but please don’t forget about me. I may say no a lot, but don’t give up…you may ask on a good day when I’m raring to get out of the house and it might turn into the perfect day for both of us!
15. Be a good listener. Some days I might just want to vent about my pain. I’m not asking for solutions or anything like that. I just need a safe place to share my feelings where I can be heard and validated so at the end of the day, my burden feels lighter. I trust you enough to share with you, because I know you’ll listen and hear me out, without trying to solve all my problems for me. Thank you, that’s a powerful gift.
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