The Differences in How People Treat Me Based on the Visibility of My Pain

Three years ago this week, I sprained my ankle. It was my own fault for stupidly trying to read my phone and walk along at the same time, and I tripped on an uneven pavement. I couldn’t walk at all for a few days and then needed a crutch to get by for a bit.

The whole thing was a massive revelation. Not the pain: I was entirely used to that, having had a massive back operation the year before. I had two metal rods running most of the length of my spine and was – and still am – on painkillers constantly.

The revelatory bit was the response that you get when your illness is visible. Suddenly chairs were being fetched, doors were being held open, people were asking how I was and expressing sympathy. The irony was that the whole thing was so much easier than the back pain, which had been going on for three years prior to that, and the recovery from my two weeks in the hospital having my spine rebuilt. I’d spent so long being exhausted by the slightest thing, being scared of being knocked over in a crowd and counting the hours until I could go to bed. A sprained ankle was absolutely nothing in comparison, yet I had folk dancing attendance on me in a way I hadn’t ever known before.

I am very fortunate in that there were and still are those who know what is going on, especially my husband, and who do understand it. I did manage to get the pain down to the point where I managed just over a year back at work teaching, which I loved. However, once one of the few non-fused discs in my spine had a prolapse, I had to give up, as I could cope with the residual upper back pain but not when lower back pain joined it.

So I am here, at home, in pain. Too foggy to do much more than a little tutoring, too sore to sit for too long, too unpredictably in pain to commit to things reliably. Chronic tendonitis in my right shoulder means I can only ever get comfortable lying on my left. I can go out and about and do things, but only if they involve less than an hour in the car on any given day. If I do too much – and very occasionally going out for dinner and having some wine definitely counts as too much – I may have a wonderful time but there will be a day or two, or even three, in bed to recover. Meeting new people involves tiresome explanations and sometimes I avoid it rather than expend the energy, despite being sociable by nature and finding too much time at home alone very dull.

I have had to get used to the fact that there are those in my world who don’t really understand it, and who think that, because giving up work was a relief initially, I am happy to have lost my vocation forever. They have had some back pain themselves, possibly, and they are managing, so there really isn’t any reason I can’t. A decade ago when my son was born I had debilitating depression, another condition that some people think you can just get over with a bit of willpower if you’d just stop making all this unnecessary fuss, so it’s not an unfamiliar scenario.

It is possible that further hospital treatment might help my lower back, but some injections I had a few months ago helped one disc but the process messed up other joints. The hospital also failed to understand that I was on painkillers anyway and would thus need more pain relief than average. I ended up in almost as much pain as I’d started in, so I am frankly scared of trying again. You get very tired of endlessly being a patient; at least at home I have some degree of control over what is happening to me.

I would give a great deal for some kind of gauge somewhere, perhaps on an upper arm or on my forehead, that showed how much pain I am in. I’m sure that a lot of people with chronic pain would feel the same. How many painkillers we need to take is a rough guide, but we are too often suspected of enjoying the side effects, so it is not a reliable one. I can assure you that the side effects really aren’t much fun and certainly don’t compensate for the pain, difficulty in working and lost family activities. There are worse pains than mine in the world and my lovely children cheer me up a lot – especially when they are being nice to each other! – but six years of being in pain is duller than anyone who hasn’t lived with it might imagine. It’s rough for my husband, my kids and my wider family, but I am more fed up with it than I can explain.

However, if you meet me for a few minutes, I look entirely normal. A bit tired, perhaps, but who isn’t?

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Thinkstock photo via AndreyPopov.