It’s a shame about the pain.

Whatever doesn’t kill you makes you stronger!

– Someone who never experienced back pain.

Back pain is a unique kind of pain.

If you suffer from back pain, any back pain, you already know how difficult it is to explain just what it does to you, both mentally and physically, to people without familiarity with back pain. It’s just one of those concepts that you can’t understand until you’ve felt it personally.And if you suffer from chronic back pain – where the pain just won’t go away – then it’s almost impossible to expect people to understand. They think you’re just exaggerating.

I’ve learned that most people I come across have no possible concept of the  unending, savage pain someone with chronic back pain is feeling. I have to remember that most people use panadol (or maybe nurofen) to deal with their worst possible physical pain – and they think that’s a powerful painkiller! I know that none of the panadol or codeine family does anything at all to help me – it would be laughable, if it weren’t so damned difficult to get other people to comprehend real chronic pain! So for most people, who’ve only ever experienced an occasional migraine, or a broken arm or leg or rib, or maybe an operation or two, the kind of pain associated with back pain is a whole new level of hurt, and they just can’t understand it.

The closest I can can think of, in terms of real intensity, is childbirth. But then in most cases, it’s over in a day or two, and at least at the end of the stay, the mum’s got a prize to take home with her. But most people, even most women, can’t comprehend what it means to have never-ending childbirth pain in your spine, every second of every day, day after day, week in, week out, year in, year out. It just doesn’t compute.

Oh, I know what you mean!

I think everyone reading this who suffers from chronic back pain (or any kind of chronic pain problem) will relate to the following experience. Someone you work with, or maybe a distant relative, or a friend of a friend, will come up to you one day and say, “I put my back out last week. I had no idea how much pain you must be suffering!” It’s kind of an apology, in many ways – I’ve found that the people most likely to say things like that to you are actually just like most lucky people, the kind of people who’ve never felt more than a mild headache in their entire life. And so they kind of assumed you were one of “those people” who said they had a back problem, but didn’t really look like they did, and if you were, you were making it seem worse or less than it was. Unless you wear an external brace or something physical, of course, that’s always an instant empathy magnet. (I’m not being cynical, it’s the way people really work. I get more offers of assistance when I’m carrying a walking stick than when I don’t, no matter how slowly and carefully I walk).

Being nice – worth a try.

Dale Carnegie, for all his faults, taught me some really valuable lessons about dealing with people across a barrier like pain.

I’ve learned to be diplomatic when people approach me with their new understanding of back pain, and I end up saying “Well, pain’s pain, and we all feel it”, and then ask them about their discomfort and offer suggestions to help them feel better. So we generally don’t talk about me, and I pretend to be interested in them (and if you pretend long enough, guess what? You actually do get genuinely interested in them – and people can tell when you’re being genuine!). That approach allows me to not be the centre of attention, but to get them to express their negative feelings about pain and how it affects them, which helps them to project those feelings back on to you. So they get to understand how you feel, not by you telling them about the ice-picks in your spine, the fire in the small of your back, or the clenching hell between your shoulders, but by letting them put their own words on their experience, and you looking like a patient, forbearing, nice person with a hidden secret that they now share in. It feels good, let me tell you, and they almost never forget what you go through. Try it, it’s worth the effort.

But it turns out that this is a Bad Thing to do, when it comes to medical personnel!

If You Feel It, Let It Out!

One of the most difficult things I’ve learned over the past few years is how to strike a balance between letting health professionals (like medical receptionists, GPs, specialists, radiologists, and surgeons) know how much you’re hurting, and not being overly dramatic or foolish about the whole thing. The last thing you want is people you deal with regularly thinking you’re some kind of drama queen or pathetic whinger, especially when you understand they deal with people with far more terrible pain and problems than you. You’ll appreciate this when you go to a new pain specialist, feeling pretty miserable after a bumpy, hours-long car trip, and suddenly find a waiting room full of wheelchairs, portable ventilators, armless/legless people, and worse. It makes you feel a little insignificant – which it should! – but it doesn’t invalidate your pain.

I’m naturally a happy-go-lucky son-of-a-gun, and I can wear an awful lot of pain without continually grimacing or grunting or moaning and groaning. As you can tell from my little stories above, I naturally try to make other people feel comfortable around me – it’s just the way I tick. So I like making jokes, smiling at people, making eye contact, expressing interest in their little problems, and doing what I can to not be a miserable bastard, but at the same time, I need to let them know I hurt more than they can imagine.

So I’ve discovered that this natural humour works against me, especially when I have to deal with new medical people. In fact, I’ve found out recently that it makes them think I’m not in as much hellbent agony as I really am – and that’s led to three pain specialists thinking that I didn’t deserve their respect or treatment. I’m now on the search for a new pain management specialist, and hopefully by this time tomorrow I’ll have one.

Then the training begins – I’m going to have to teach yet another medical person how to work with me instead of treating me like a piece of meat, how to talk to me without dumbing it down, and how to make sure they “get” me and my goals and aims.

I’ll discuss some of my medico-training strategies in a later post later on. Right now, I gotta lie down and get my sanity back!

Thanks for reading, and I hope this gives you some tools to help deal with this sort of issue in your own life.

Please, do feel free to add your own ideas, suggestions, and comments below. Or, if you have some questions, or if you think it sounds too easy (or too difficult), let me know and we can maybe have a chat and figure something out that will work for you – or you can tell me your ideas and they might help other people in the same boat!

Cheers,

Cephas Q Atheos

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