I’ve never had someone come out and say that I complain too much to my face as such. However I get the distinct impression that some people think that I do talk about my illness too much.
It’s actually terrible that these poor, healthy people around me have to listen to so much of my belly-aching right?
Here’s the thing though, the people around me probably only hear about 10% of the difficulty I that I go through and internalise. How awful for them to be so worn-down and exhausted by my occasional complaints about chronic pain. I literally cannot imagine how difficult that must be.
I’m being sarcastic of course, but the point stands.
I look normal, because I fight to be normal
Normally when I tell someone that I am chronically ill and have incurable pain they look at me a little dumbfounded. Mainly because I look normal. I’m not sure how someone in the worst throws of pain is meant to look, and I’m sure I look like their dictionary definition of pain from time to time.
Truthfully though, most of the time I’m in pain, (as mad as this sounds to anyone else). I look like a regular human being. I might have a wry smile on my face, I could be belly-laughing in the sunshine. Doesn’t mean that I am not in pain. Just means that years of being in pain hides the telltale signs from most of the people around me.
When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak. – Audre Lorde
Each day I practice my careful maintenance in not giving away how much pain I’m really in. Hiding the pain a little relaxes those around me, so they relax around me, treat me normally and I feel a little bit better in turn. I save the moments where I have to say something about my pain or ask for help for the really worst moments of pain and discomfort, when no amount of coy behaviour will keep my painful secret hidden.
Illness gives me great resolve – so don’t test me
So I find it a little insulting when people imply that I or anyone else complains too much about pain. Most of us who are chronically ill work very hard to ignore or look away from our pain when it continues to try and rile and upset us. We fight every single hour of every single day to claw back a little normality in our lives around how we are perceived or treated.
So to that end, I feel very little guilt when it comes to talking or sharing my experience of living with pain, and if anyone has a problem with my immense restraint when it comes to coping with my lot, then that says more about them then it says about me.
While most inconveniences are passing for those around us, we rarely get a break from our pain and all the baggage it brings. So the least someone else can do is listen when we share the details of our difficulty. It’s our burden to bear, but for the most part we manage it with enormous patience and great dignity.
And that’s before life gets in the way too
When I recently went out for what was to become a four hour group bike ride in the midday sun. We stopped for a break in the shade and someone else who was struggling with the heat a bit more than I asked me; “Aren’t you hot? You don’t look hot at all.”
Well of course I was hot, I was feeling a great many things at that time. I was hot, I was in a great deal of pain and I was very tired. The difference was I wasn’t throwing my arms up in the air and getting flustered about it, I was just getting on with the ride. I think that’s a great metaphor for how we cope with illness.
When someone else is ill, they’re not accustomed to it, so they get flustered and frustrated and complain openly. We’re so used to being beleaguered with pain we don’t even bother to tell anyone about it most of the time, it’s just our default setting. Now, that doesn’t make it easy for us, but it does make it a new sort of normal.
So we manage with daily pain, and we manage all the other problems and issues that life throws at us on top of that too – all the things that a healthy person would feel ripe to open their mouths about. Only difference is a chronically ill person will listen and empathise – almost always – despite how much worse they are feeling.