You can’t see it

Joan Didion“That no one dies of migraine seems to someone deep in an attack as an ambiguous blessing.” (1).png

You know I am in a lot of pain right now and no one would know it. It is from a lot of types of pain. A raging migraine. Intense allodynia  on my back I have had for months and cannot seem to treat. FM pain. Shoulder pain from an injury. Just a lot of pain. Not an inch of it is seen. I was thinking that today working with that allodynia just burning a hole into my back. It was so Present it was just near unbearable. My clothes just scraping against my skin. Migraine raging. And a bright smile on my lips and in my eyes. Chatting away like I had not a care in the world.

Fraction.You see but a fraction.Chronic Pain.So much is unseen.But felt.An entire existencehidden from sight that affects one's entire existence.Unknown.Perhaps,unknowable.(1).png

Why? I mean it is a boatload. Not a wince? Not a grimace? Where are those pain behaviours? Why am I referred to as ‘stoic’ so often?

Because the pain is chronic. Simple as that. You learn pretty fast that there is no point to any pain behaviours when you need to try and function with it. And also you have to try and cope. And my way of coping when the pain is intense, and intolerable, is getting more and more quiet, and immobile generally. I have learned distress makes the pain worse. Crying makes a migraine worse. Thinking about the pain too much makes me feel worse, until it is all you can think about and then I am just, still, quiet and immobile.

So it isn’t that we have no pain behaviours, it is that we don’t have the ones people typically recognize in someone that is in pain. We are used to masking it for various reasons to function. In the workplace, for example. And so while a surprising shot of pain my elicit a response, the usual amount will not. A jolt in the back or knees that catches you off guard will get a groan or remark of some sort, but every day pain will not. Even if it is quite high on the pain scale.

But you will have ‘tells’. Just different ones.

I get quiet. I laugh less. I smile less. Move less, or more slowly, or ‘carefully’.  Hell, at home, in high pain I am wrapped up in a blanket on the couch and there I stay. But that is in the 9 range. Today I was in the 8 range, and that is actually hard to deal with. It is my line. 7 is my ‘I am capable of functioning but I do not enjoy this level of pain and having to function with it.’ 8 is ‘I really am having a hard time functioning and quite literally the pain is mostly what is on my mind.’ Over the line into, yeah, this isn’t good at all and I Need something to manage it Now. But I had tried everything already. So sucked to be me. Still able to mask it, because I have to at work. I can’t at a 9. I think anyone would be hard pressed to at a high 8 let alone a 9. But I just power through it at an 8. Mind you, most of the day wasn’t like that. Not at all. Aside from the allodynia.

So we have tells. And we all have tolerance levels. And how we function with pain and how we cope. I am doing much better lately because high pain days are less. High pain days every single day? Breaks a person. It just does. With less of them, much easier to cope with them dispersed in there.. or less of the day, like today. An 8, yes, but not all day. Once it gets going though, yeah, sort of stuck there. So now a long rambling pain post.

Some tells are simple. My silence. My lack of emotional expression, laughter and smiling. Or that inability to even force a smile. And, such as avoiding my left arm, I may favour one thing over another. I have peripheral neuropathy in my right hand and when it is bad at work I may avoid handwriting in favour of typing. Some people at work favour printing a form and writing it out… nope, nope, nope. Aside from the fact the damage caused motor damage and made my writing just … bad, it also makes it hard to control the pen on days where it tires. So typed out it is. There are ways around some things and maybe no one notices you are even doing them that way for a reason, but there is a reason.

I may walk at a meandering pace when my leg or foot pain is up there and people may think I have no particular place to be really. I have had people honk their horn when I am crossing the street and am in too much pain to pick up the pace. Sorry, not sorry. You can wait the extra few minutes, buddy. I think a lot of us do this one. We just slow down because pain limits us. But we are not limping. We have no cane. No assistance device. No one can see why.

I wear my migraine FL-41 specs and that is a ‘tell’ and I suspect people know it is for a reason and are too polite to ask. After all there are specs for epilepsy and macular degeneration. So that is something visible but isn’t remarked on, which is nice really. Other people may use a cane, sometimes, but not other times and that is another visible tell.

And I do have a tendency to rub my neck a lot, which is another tell. It always hurts like hell and I have a thing where I rub it because my brain thinks by doing so I can ‘ease it’ even though I know I cannot. I mean, if I could put ice on that 24/7 I would, but that simply isn’t feasible. You know what is a tell as well? The 800 pain creams I carry around. Migraine balm and pain creams. Who carries that around but people in chronic pain, eh?

Your tells may be entirely different. But you have them. And the average person? Can’t see them. Your pain is invisible to them. Because it isn’t the norm. Your significant other and loved ones though, usually they can tell those nuances pretty well. I usually flat out and tell my spouse. And I do this because I also get silent when I am angry. *snicker* I do. I don’t like to speak in anger. So I get silent while I absorb information to decide whether I should be angry or not… usually not. But he certainly needs to know it is pain and not anger, eh?! He usually knows but once or twice he wasn’t sure. So now I confirm. Because I am rarely angry, but high pain…well that is once a week or twice a week.

It is interesting to think about though, isn’t it? How we lose those obvious pain behaviours but gain more nuanced ones.



  1. This is so true, about having tells but how others often don’t see them. I think even when they’re more obvious ones, other people can often be very wrapped up in their own lives to notice/ask as well. I just wanted to send a gentle hug your way. I’m a little quieter today, propped up with a cushion, painkillers, and a heavy heart from feeling rather disheartened. Maybe tomorrow will be a little better for both of us, though it’s just a case of riding the tide day in, day out.
    Caz xx

    Liked by 1 person

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