GUEST POST – What I Wish People Knew About Chronic Pain by F R Kesby

Chronic pain is a common problem among the disability/spoonie* community but is often misunderstood by those who don’t experience it.  So, what do you need to know if you are supporting someone with chronic pain?

It’s not the same as any other pain…

There is a big difference between pain you know will end and pain that may never end.  A broken ankle or wrist hurts like fuck, I know that.  But a few weeks in a cast, an operation and some physio and that pain will (normally) go away.  You know that.  The pain from an ongoing condition, such as the widespread pain of fibromyalgia or chronic back pain will carry on forever and boy do you know it.  Every time there’s a slight increase or an extra twinge or a just a bad day you know that this could be your life for now on.  This could be the next twenty, thirty, forty, fifty, sixty years.  Next time you stub your toe or accidentally slam your finger in a drawer try and imagine knowing that will never stop.  That’s chronic pain.

It’s not ‘just’ pain…

When chronic pain moves in it doesn’t come alone.  Chronic pain will tuck itself in your spare room all well and good but soon enough you’ll find depression is crashing on your couch, anxiety is eating all the food in your fridge, insomnia is playing loud music at 3am and exhaustion is taking three hour bubble bath naps in your tub.  Pain is tied very closely to our emotions, that’s why some people find it harder to deal with than others, so raised pain levels can make all negative emotions seem worse.  This is also tied in with my next point…

It effects everything…

Imagine trying to go for a lovely walk along the beach with your friends.  There’s a lovely view, the promise of vinegary chips followed by whippy ice cream, interesting conversations and lots of laughs ahead of you.  But, you’ve got a massive weight tied around your ankle and one arm tied behind your back.  Think you’d enjoy that day?  No.  Imagine being in bed with a Hottie with a capital H.  They’re doing all your favourite things and they’re very, very good at it.  But, there’s a car alarm going off right inside your ear and the bed is made of that scratch jumper stuff that gave you a rash as a kid.  Would you enjoy that sex?  No.  This is what chronic pain is like.  It ruins EVERYTHING.  Sure, there are moments (sometimes even hours) of joy and wonder and all the good things in lives but chances are in that very same day there will also be tears and clock watching for the next dose of painkillers.  Much like sand (no, I’m not missing the beach at all!) it gets everywhere.

The meds are not fun…

Here is something I get a lot; ‘Ooh Morphine, fun, I wish I could have some of that!’.  No.  You.  Don’t.  It makes me sick.  It makes me confused.  It makes me dizzy.  It tastes like bleach sweetened with Calpol and comes in a bottle with such a good child lock my arthritic thumbs often can’t open it.  You really don’t want it.  And, surprisingly, neither do I.  I don’t take it because it’s nice or fun, I take it because the option is take something horrible or be in so much pain I can’t breathe.  We don’t take them for fun.  And, yes, we know it’s addictive, we know it’s bad for us, we have read that article about it, we know there’s an opioid crisis, we have indeed tried stretching, yoga, positive thinking, mindfulness, meditation.  Stop telling us about it.

It is unpredictable…

We’re sorry that we cancelled on your birthday party/hen do/Saturday night cocktails/shift at work/cat sitting/cinema trip/being able to wash the dishes – we we’re in pain.  We can’t know when we accept the invitation or make the plan that we will be in a lot of pain that day.  Often, we can’t even know if we’ll be in a lot of pain in the next few minutes let alone the next few weeks.  And this may come as a surprise to our friends/family/customers/bosses but WE HATE IT WHEN THAT HAPPENS TOO!  We hate cancelling, we hate phoning in sick, we hate missing out and we hate putting our lives on hold to deal with a pain crisis.  But we have no choice.  People think that chronic pain means not only constant but constantly the same and that’s not true at all.  It fluctuates, it moves, it changes patterns and some days it, even though it’s not actually much worse than normal, we just can’t handle it.  Constant doesn’t mean consistent, unfortunately.

But…we are still people.

Yes, we have terrible pain all the time and that means we can’t do some stuff, but we’re still people.  We want to be invited – just think about what you can do to make it accessible for our needs and make us know we aren’t letting you down if we can’t make it.  We want to come to things – just bear in mind that we may need to cancel last minute if we’re in agony.  We need human interaction – even if you just come over to binge watch OITNB and eat crisps, we will appreciate it.  We still like all the fun things you do – we just sometimes need to do them a bit differently.

Thank you all for reading.  I hope if you’re a fellow chronic pain sufferer you recognised some of yourself in this, feel free to drop us a comment on things you might want to add (or even things you disagree with, though I may cry!) and if you aren’t then I hoped you learned something about your friends who are.

*Spoonie is a term for people with chronic illnesses.  The term originally derived from the Spoon Theory which was used to explain the effect of chronic illnesses on everyday aspects of life.  It has since been co-opted by many online groups as a bonding and activism tool.

 

F R Kesby is a blogger over on Spoons, Loons and Toons as well a poet and storyteller.  She lives with fibromyalgia, chronic back pain and complicated neurological issues, among other things. You can find her ranting on twitter at @FayKesby or find Spoons, Loons and Toons on Facebook.  She is also chair of Leeds Savage Club, who are on Meet Up and Twitter at @LeedsSavage. 

 

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