"People" (by that, I guess I mean society) seem to think people with chronic pain have no life. They encourage us to "get out, get some fresh air, it'll do you good" and as soon as we do it's all "see, that's all you needed to get better!" Never mind if we still hurt. Never mind if we tell them we still hurt. We got outside. Therefore, we MUST be a faker and "that chronic pain thing" was JUST A PHASE.
So when we go out anywhere, or whenever we attempt exercise and movement, we get slammed. "See, look, you're all better!" Oh yes, we're so much better that we hurt even dosed up to the max on painkillers to be able to go and out and watch the fireworks for one evening (you didn't know we were on the medical limit on ibuprofen, paracetamol, codeine, pregabalin AND buprenorphine, did you? But even if you did you'd come up with some reason we're fakers or liars...).
But no, to society, we must be liars because we exist in the outside world for a little while. If we can smile we can't be in pain. If we can laugh we can't be in pain. If we can leave the house we can't be in pain. Whatever we do - or don't do - we must have faked/be faking our pain. We can't be in that much pain because we got outside and DID SOMETHING ("OMG!!"). Society bets it was just an injury. Society bets it was just a phase. Society bets it was all in our heads. Or, if society does think we were in real pain...then if we are outdoors, we must be on the road to recovery! Yay!
This is what society just does not get:
For every day we push ourselves through the hurt and take one painful step forward, we take two steps back physically. We pay for the effort and energy spent in those one or two days a week of appearing "normal" to society.
But people only see "normal". Does society see the preparation that goes on behind the closed door before we get out and try living life? Do they see the comatose body on the sofa, so exhausted they will go to bed and sleep for 24 hours or more, and then wake up barely able to move? Do they understand that is part of the price paid for our "amazing recovery"? No.
It is ONLY thanks to those of us who are "airing our dirty laundry" (real words spoken about me) that some people start to get the message, but it needs more people showing the world the reality of life with chronic pain. And that means airing more of our "dirty laundry". I keep certain parts of my life private. But some parts are open to the world, and that's where I have received criticism, accusations, where lies have been fabricated about me. I'm not afraid to take all of that because I am more than repaid for putting myself on the line in the messages I get thanking me for making someone feel so much less alone. The messages thanking me for giving people hope. For helping them understand their child better.
I have to "air my dirty laundry" otherwise how else will society eventually "get it" and stop putting us down even more? If they want to spread lies or make assumptions - it'll come back on them. The truth will out. It always does.
So, back to where we were. When they see us in a chair in the next day, or crying from pain, we must be faking it.
"You were totally fine at the weekend and doing backbends so why are you like this now? It can't be chronic pain or you wouldn't have been out training at the weekend!"
Answer to the naïve: We are like this now BECAUSE of the weekend.
Leading nicely onto the even better, even more naïve assumption: "You've just overdone it and stretched yourself too hard. You brought it on yourself by exercising."
This amuses me greatly. Society, you do know doctors recommend exercise and trying to maintain as normal a life as possible to the chronically ill, including those with chronic pain? And yet the chronically ill are fakers because we go to work, or because we spend two days a week trying to live life as the doctors recommend, no matter the pain we have to work through and live with to do so, instead of just existing 24/7?
We know our limits.
We know when we've pushed them.
We know we have to push them because we know exercise and keeping moving and getting out in the world is recommended for people with chronic pain and ultimately it does help.
So we do that.
We get judged for that.
We pay for it for days afterwards, needing more maximum dose pain relief and all the help available from the pain clinic, physio, the consultant and the doctors. We need crutches, stools to sit on in every room of the house, adapted utensils or adaptations to the house so our inflamed bodies can function whilst under attack from chronic pain (plus, if you're unlucky, an autoimmune disease). If our hands or arms are affected too we need a wheelchair. Wheeling ourselves in it hurts but it hurts less than putting our entire bodyweight on our hands with every step.
We cry - we cry a lot. We crawl up the stairs. We climb down stairs like a toddler, two feet per step.
We get judged for all of that.
Yes, getting out and about helped. It just about warded off a deepening depression because of our decreasing ability to do things independently. It gave us hope that one day, when the right pain relief or treatment is given, we might be able to do those things pain free. It won't happen for most of us, but we have to hope. And who knows what the next year, five years, ten years will bring in medical advances in treating so many of the diseases that cause chronic pain?
We begin to see a little light again as the pain eases maybe 4 or 5 days later. So we exercise again. We go out into the world. We live life and try to smile, to laugh, to enjoy ourselves even though in the back of our minds we know the price we will be paying for this. The price we have already paid in putting so many drugs into our bodies to be able to be in this place smiling and laughing.
And we get judged again.
Whatever we do. Wherever we go. Whatever day it is, we get judged. A never-ending cycle. Never mind that we are following doctor's orders to move and exercise. According to society, if we do that we can't be in pain.
Bull to that.
The truth is, chronic pain just does not register in society. And if such a thing does exist to them, then the sufferers MUST (as in, in they're not then they are faking it) be hermits, never ever going out into the world and never ever moving our bodies or exercising, because according to society and their snap judgments, that disproves our pain.
If only this were a sick joke. Except it isn't.
Maybe next time we will just try crying the whole time we are out. Maybe we'll scream out as the acute breakthrough pain gets through all those drugs. We'll let our body collapse at the earliest sign of it giving in. Maybe we will let our pain show. Just to prove the existence of chronic pain.
It's real. It hurts as bad as and often worse than a broken leg. But you can't see it. So you rush your children away from us in case we are nutcases. You, as a member of society, move away in case whatever we are suffering could in any way ever infect you.
What I don't get is this.
You know tens of billions of pounds exist. You know Christmas Island exists. You know the Beckhams exist. You know the Queen watches TV. You've not seen them with your eyes - but you know they're real. So why is it SO hard to believe the existence of chronic pain? Why can't society see that chronic pain is a disease in itself, and it can be in combination with acute pain and other diseases?
My view, from someone who's been slammed for daring to crawl on my hands and feet and yet two weeks later be in a wheelchair, and labelled a liar about the cause of my hand inflammation not being due to the autoimmune disease, but because I carried my hired wheelchair up a few steps (at least ten days ago, go figure), fighting against my pain to take the ONLY possible route to support my loved one, because as that very person said you'll regret not going back there...these people, this society, is naïve and clearly has no knowledge or experience of chronic pain or disease at all.
The above photo shows my hands in the midst of a flare up; swollen, painful, burning. Yet it was accused by a "friend" as being caused by lifting a wheelchair up a few steps over ten days ago. Would you believe that? Or would you see the swelling and how much it impacts on daily life and realise that actually, chronic pain and diseases that cause chronic pain do exist?
Not only does society need proper education on mental illness, but it needs a sharp and prolonged lesson in chronic pain and its forms and the ways sufferers are advised to live with it too. It might be a bit dull...but sharp, prolonged, dull; would you believe, that's our world. Minus the meds which destroy our liver if we're unlucky enough to need a lifetime of medication.
One day, just one day society, will finally accept chronic pain without feeling the need to demoralise and depress us even further.
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