A little thing a lot of people without chronic illness may not understand is that it can be really, really difficult to tell people you are in pain. It may sound like a simple act; a brief discussion with an employer, an off the cuff comment to a loved one, but for me it’s often an impossible task.
Today I am writing this in a LOT of pain.
It’s one of those days that come every so often where everything hurts. My hair hurts. My eyes are constantly on the verge of welling up and my hands are fists primed to punch something/someone/your Dad out of sheer frustration. I wouldn’t though, I’m a lover not a fighter, and my arthritic hands can’t make fists right now so it would be a weak slap at the very least. Plus I like the gifts your Dad buys me too much to rock the boat.
You see it’s easy to write all of this down, to tell a computer screen that I’m in pain, mainly because I can’t see your face as you read this. I can’t see your eyes roll or glaze over as you desperately try to force your brain to tell them otherwise. I can’t see you bored of me, or see the sympathetic head tilt.
I can’t see you disbelieve me. I can’t see you pity me.
Of course I’m not saying you all do these things, of course you don’t. Most of the faces I see are that of concern. And yes I’m supremely open to the suggestion that it may be my EXTREME anxiety and paranoia causing me to see these things in your visage, but it’s just that I’m pretty much a seasoned pro at spotting these reactions now.
The problem with talking about pain when you’re ‘in’ it, is that it allows room for little else other than feeling it. It can be genuinely difficult to even form a coherent description of it when you are experiencing it. I suppose that’s why doctors have developed these charts; the ‘how many out of 10’ and the ilk, for speed and accuracy in treating us. But those charts don’t apply when you are talking to people outside of the doctor’s surgery.
This morning as I struggled to get some sort of relief from the pain in my legs, my stomach, my head and my ENTIRE USELESS CARCASS, I tried to find ways to communicate this without over dramatizing. I didn’t want to sound ridiculous, like I was trying to skive at work, or bore my friends. But instead I played it down, like I always do, because it’s easier. Easier for me, and easier for them? I don’t know. I just can’t bear the judgement sometimes. It’s so utterly hypocritical of course, as I’m always the one who preaches how important it is to be transparent, open and honest in talking about your illness. But today I cried like I’d been subjected to a double-feature of Terms of Endearment and Les Miserables in the bathroom instead.
I’m not looking for sympathy here by the way, absolutely not, but I’m so continually and persistently anxious that I am already pre-empting your reaction to this. I care what you think of me and I wish I didn’t. The bottom line is (by now I shouldn’t have to tell you, but PUN INTENDED), when we are in pain, it’s all we can do just to tolerate that, let alone try to express how we are feeling. So just try to be patient with us. Make us laugh. Don’t let us see that we are frustrating you if we are. I know that may seem selfish but we honestly won’t have the energy to get into any form of debate with you, from brokering a trade deal between countries to forgetting to take the bin out, it’s all impossible. Give us a bit of time to feel ‘normal, and don’t make us feel that we should apologise for it. Even though I’m 99.9% sure we will later anyway.
Just be kind to us, it really is that simple.