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To the Person Who Thinks Chronic Pain 'Can't Be That Bad'

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I have a friend. A poisonous friend.

When she is angry, she makes my days hell and my nights sleepless. She attacks me when I least expect it, especially if I’m lulled into a sense of security. She follows me everywhere, every day to the point where I truly cannot remember a time that I lived totally out of her clutches.

She is cruel. She cares little for family occasions, first dates, social events and the like. She perhaps forces me to stay home, or she makes sure she is right there with me, ensuring I don’t forget her presence for a moment.

She’s been a silent witness to some of the most remarkable and agonizing moments of my life.

She’s always here.

Her name is Pain.

There are many who live with her, just like me. We do our best to keep on living despite her glowering presence. It doesn’t matter how long you live with her, you never become immune to her.

Yes, we learn to continue our lives, even the mundane daily stuff that keeps it “normal.” Yes, we smile, laugh and make jokes. We make love, shop and eat, despite the anger it causes her to display, and we relish and appreciate anew the simple joys that take much to remove or lessen. Cuddling my grandbaby. Looking into her eyes. Laughing with my children and hearing them say, “I love you Mama.” They all make life with her worth living.

But let me tell you a secret. It hurts! It never stops. You wake, it hurts. You rest, it hurts. You do some basic physical activity, it hurts. You eat, it hurts.

See, constant and chronic pain isn’t something you magically get “immune” to. If I kicked you in the shins wearing my boots every 10 minutes, you would not be desensitized after the hundredth kick, would you?

You don’t get magically used to pain.

Let me tell you another secret.

I don’t have a “low pain threshold,” and neither do the huge majority of my pain family — those others I know and love who suffer daily alongside us all.  On the contrary, whenever it’s possible to physically do so, we do things like go to markets, gatherings, the park and shopping with our babies. Yes, like “normal” people! But you see, we often do it in such pain that if anyone else experienced it, they would demand pain relief at the closest emergency room.

Normally, pain is your body’s sharp and intense warning that something is amiss. You are meant to feel it, and the amount of pain allows you to determine how serious the injury may be. With chronic pain, the pain is no different. It screams at you to notice it. It rends your heart and mind with its incessant demands to be noticed and treated. However, no matter what the pain relief is, unless there is an urgent or acute injury or illness on top of that pain, then the aim of the medical profession is to relieve it to a degree. The aim is not to take away pain. It is not necessarily realistic to do so long-term unless we are palliative. So that’s the next secret I have for you. Despite often hefty pain-relieving medications, pain is diminished to the point that we can push through it and attempt normal function, but she is still right there

Please, the next time you think to yourself about someone with chronic pain, that it can’t be “that bad,” that we are being hypochondriacs or that we are just being a baby or just trying to get out of some activity, give yourself a forehead slap!

Here’s another secret.

It’s rare for someone who lives with pain to actually tell you that she hurts so badly she fights the urge to bash her head against a wall, or scream, or just cry about the unbearable unfairness of it all. While you look on, we  protect you from our pain. “Nah , it’s fine, just a twinge.” “It’s OK, I’m just a bit sore.” Or the automatic response, “Fine thanks, how are you?”

We learn fast. To tell you of pain, and the misery she brings, often eventually creates anger, resentment, ill-treatment, impatience, and out and out rudeness. At first it’s all sympathy. But I don’t want that! Empathy! That’s what I need. Not the (not-very-discreetly) rolled eyes and mutterings.

This is why I protect you. Because to one who hasn’t experienced chronic, disabling pain, to show that I hurt appears to diminish me, to be a weakness, a failing. It’s humiliating to justify my pain, so I seldom choose to do so.

The best thing that you can do for a friend or loved one who also lives with pain is to realize that pain hurts! If we are exhausted, sore or unwilling to do some activity, it’s because we hurt, badly. Even at the moment that you helpfully attempt to change the subject, that hurts, too. When you chatter brightly about your toe or that sore back you had once, you diminish our reality and you diminish your capacity to hold anything nearing empathy for us. Instead, ask what tangible thing you can do to help. Or say truthfully, “I don’t know how that must feel, but I’m here if you need me. I believe you. I love you.”

Remember that I invariably almost over-respect any pain that you have. I will often fuss relentlessly if you are even mildly sick or hurt, because your pain is one that I feel I can help, unlike mine.

Most important, here is the final secret I will share with you.

Pain moved in uninvited. We didn’t ask for her or welcome her. She is something inflicted on us entirely against our wishes. So please don’t punish us for something we have zero control over. And learn to listen to us, and hear what may be underneath our “just a bit sore” and “It’s OK.” That means more than anything.

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Originally published: April 14, 2016
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