Recently I was sat around a dinner table with some visitors, and someone there was trying to share their experience of living with incurable pain.
This took a lot of bravery to do in such a social setting, and being in pain myself that moment I was listening intently to their story, when someone else quipped that this person was “going on about their pain again” and “no one wanted to hear about it”.
I corrected the person, and explained that I did indeed want to hear, and it was very important to listen to stories of pain, as I lived with chronic pain myself.
Isn’t it interesting that pain forms such a huge part of our lives, but years of societal conditioning has told us that it’s something we have to carry quietly?
I completely disagree.
Some things others could ask
I’m wholeheartedly trying to rewire my brain to disassociate the discomfort I feel (or think I should feel) when I start to talk to talk to other (healthy) people about my experience with pain.
My parents have the right idea, rather than asking me how I am, they ask me how much pain I am in or if I am having a good pain day or a bad pain day. It’s takes all of the pressure off of me to lie about how I am really feeling, and it gives me the opportunity to ask for help if I need it.
I wish more people enquired about my life this way rather than asking the same, inane questions that everyone else is asked. When we’re ill we’re coping with so much more in a day than a regular person, and it would be nice if more people acknowledged the great job we’re all doing by enquiring about my pain, and validating my experience with it rather than helping to bury it.
A lack of empathy
To people living without chronic pain, we must seem like chronic complainers. In my experience though, most people keep the vast majority of their pain symptoms quietly to themselves as best they can. But what’s the big deal about being more open about what we’re experiencing? Truthfully most people who will try to play down my pain or try to move onto another subject are people who live happily without illness or long-term problems, it’s easier for them to try and put the conversation about pain and mortality out of sight and out of mind because it’s not something that really comes into their horizons.
And yet many people will have some experience of either acute or chronic pain in their lifetime. Maybe (if they’re lucky) not until they reach later life. So it seems to be a case of not wanting to acknowledge a problem that they don’t think effects them.
However chronic pain effects everyone, but when you’re young and pain-free it’s impossible to see how.
With an ever increasing (and aging) population this is something we should be educating everyone about (not just the old) something that could become a normal part of life – and crucially – that there are ways to improve your quality of life with pain and how it’s not something you have to put up with.
A recent example
I’m reminded of a time I travelled on a bus and sat in a seat designated for the disabled and someone looked at me once I sat down and said. “You can’t sit there.”
I explained the reasons why I could sit there and the person’s demeanour changed from one of consternation to empathy. They’d assumed one thing based on how I looked and balked when confronted with the reality. That I could look completely normal and be in a lot of pain.
We shouldn’t feel put off about sharing our pain, but we should remind people of how we’re feeling now and again, and in doing so feel confident enough to challenge people who aren’t comfortable when we reject the silence of pain.
If all else fails, I repel the discomfort others try to throw at me back at them. For example people who doubt I’m really ill or doubt my symptoms (like short term memory loss) are real. I talk about my illness in depth to them, I deflect their negativity like a laser beam, I overwhelm them with information and this tends to put them on the back foot with the extent of their ignorance of what I and others manage with each day.
Don’t be afraid to talk about your pain, it only suits the “be quiet, I don’t want to know” agenda of the person you’re talking to.