- People with chronic pain seem unreliable (we can’t even count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
- An action or situation may result in pain immediately. several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
- 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.So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. - The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. (Sensory overload)
- Patience may seem short. We can’t wait in a long line; I.e social distancing outside a supermarket! or can’t wait for a long drawn out conversation.
- Don’t always ask “how are you” unless you are genuinely prepared to listen.
- Pain can sometimes trigger psychological disabilities (sometimes temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It’s ok to be depressed occasionally when you hurt.
- Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest, or not. Chronic pain people appear to arrive and fade unpredictably to others.
- 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 chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down). My friends know this…
- Small acts of kindness can seem like HUGE acts of mercy to a person in pain. 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.
- 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.
- 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 recognised “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us. As my neurologist once told me, we understand the hard wiring but we are yet to understand the soft wiring.
Lessons learnt
Music is my go to, what’s yours?
Since January, meditation is my go-to. But music is a second-usually helping me with meditation. I went through a free online mindfulness course for stress reduction (based on John Kabat Zinn’s work) through palousemindfullness.com That’s been a big help. I have ADD plus FMS (and others) so I never thought I could “focus” but each week’s lesson (that I did in two-three weeks) was so approachable, I was able to find out what mindfulness and meditation truly can be-not at all the sterotypical sort I thought it was.
Great list you’ve given here. I especially appreciate #6. I am open, so if you ask I share. Sometimes that is met with a feeling that they didn’t really want to know.
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That’s so amazing what you have achieved Katie, I have been using mindfulness apps too since lockdown. It took me time to accept it could be helpful. Music is my everything too! I don’t think I would have made it through without it. I agree if you ask I’ll be brutally honest. Most instances people feel sorry for you but I don’t want sympathy. Empathy is what we need to survive. Stay strong Katie and thank you for sharing that really means a lot. 💜
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