Pain acceptance needs more than individuals

Vox’s Impact podcast has recently released an episode on “Pain AcceptanceVox has written upon before, and I generally respect their approach to such things. This article from The Conversation is also a good summary of the background. It’s important to remember that I’m coming from a couple of different angles here – firstly, I’m in the UK, so my experience of healthcare is going to be different from that of people in the US – not necessarily wholly better in every way, but certainly different. Secondly, I live with chronic pain, and have done for nearly ten years now. I take a daily SNRI and, occasionally, a non-opioid anti-inflammatory painkiller; I also try to swim and walk regularly. The list of treatments I have tried that haven’t helped is much, much longer – and includes Graded Exercise Therapy, and have had plenty of experience with less-than-awesome care because of my disability. Thirdly, I research chronic pain as a sociologist and a critical disability academic. This doesn’t make my position unique, but it does give me a definite bias.

I really recommend listening to the podcast if you can (it’s a pity there’s no transcript – and while I appreciate this pushes the cost of making podcasts up, as well as seeming against the point, it does mean it is inaccessible for hearing impaired and D/deaf people), but in summary: health policy journalist Sarah Kliff interviews several people to talk about managing chronic pain – two people with chronic pain, one who uses opiates and wants to continue doing so, and one who has used opiates in the past and has been able to switch to non-opiate ‘acceptance’ management. She also talks to Jane Ballantyne, president of an organisation called Physicians for Responsible Opioid Prescribing, who has written and spoken previously about the need to explore non- and low-opioid chronic pain management. Kliff also talks about her own experience with chronic pain, which I appreciated.

In brief – “pain acceptance” is pain management that is closer to what lots of people in the UK will probably be pushed towards, without the ‘acceptance’ part – and indeed what I have experienced, in part. It is the use of non-opioid medications, along with chronic pain-specific mindfulness meditation, cognitive behavioural therapy (CBT), and physiotherapy – and possibly other approaches, from hydrotherapy to acupuncture. Pain acceptance also makes a point of asking people living with chronic pain to accept lower pain, or managed pain, rather than no pain – and looks at how to live a good life with chronic pain.

When it comes to how we think about medical care, zero pain is assumed to be the target – it is the assumption a doctor makes about what their patient wants, and the assumption that the patient makes about what their doctor can do. And zero pain is also what people living with chronic pain generally want – especially at first. And it’s a perfectly reasonable thing to want, because being in pain is rubbish. However, it is not always a possible thing, and as Kliff and one of her interviewees point out, this is not always addressed from the outset. Instead, each new treatment is presented as “this one will be the cure” – partly because doctors don’t want to be seen as fallible (Sarah Wendell talks about the ‘hero complex’ of doctors in The Rejected Body) and they do want their patient to give this one a go. Unfortunately, this has the side-effect of hope, and it’s the hope that makes things so awful when the new treatment doesn’t produce zero pain – it might lower the pain a little, or a lot, or it might not do anything except introduce some new weird side effect, but when you’ve been promised and hoping for zero pain, anything except zero pain is a crushing disappointment. And then you have to pick yourself up and start again.

What the podcast missed out, for me, is exploring why people get suckered into that hope – and why doctors find pain acceptance/management such a difficult thing to discuss (especially if those doctors are not chronic pain specialists). And why people find the idea of pain acceptance so hard – even those who live with chronic pain.

My thinking – and what my research has been about – is that it is to do with ableism, and how pain is conceived of in everyday life. Bear with me, because I’m going to say some things that might not sit well with you at first. Pain is positioned in wider anglo-american   culture – with differences specific to specific places and people – as a whacking great negative. People are supposed to not be in pain – normal people aren’t in pain. I use ‘normal’ to mean both normal, as in norm-core average, but also as in the ideal, as in supposed to and should be. A lot of normal is hard to spot, because it is the ideal – it doesn’t stand out as different because our cultural discourses tell us that that’s how it should be. We don’t notice women wearing skirts because that’s a normal thing for a woman to do, we don’t notice not being in pain because that’s normal.

But more than that, the normal-ideal means that we shouldn’t want to be in pain – the cultural discourse is that pain = bad. There are exceptions here (childbirth, for example, but also getting a tattoo), but they don’t deny the core of pain-is-bad, just twist it to say pain-is-bad-but-necessary-for-this-one-thing. We don’t like seeing other people in pain (or talking about it) – and there are various theories about why this is, including something called mirror neurones in the brain which may or may not have to do with empathy and learning – but it also comes down to pain = bad. Pain is out of place, and like any other matter out of place, it is gross and weird and we don’t like it and could it please just go away now before I get it on my nice normal pain-free self. I’m over-simplfying a bit, but other people’s pain is like cooties.

Fiona Kumari Campbell, when writing about disability and ableism more broadly, calls this reaction ontological impossibility – in being confronted with disability, we turn away, horrified on a very visceral level, because we are being forced to imagine not-normal as possible and we just literally can’t even. The discourse of normal is really strong and it takes a sustained effort to see it and break it, and we have to break it every time when we come face to face with difference – even when we are already different ourselves.

And this is why zero pain has such a strong sway over us.

It isn’t just that, though. We have also managed to fuck ourselves up somehow to acquire a discourse of risk and blame around illness and disability – we assume that someone is sick or disabled because they have somehow failed to mitigate risk, or look after themselves properly (or their parents failed). When it comes to being in pain, we’re still in pain because we’ve failed to try this cure, or the next, or the next, or the next, or the next. We can’t really have tried everything because if we had, and we’d really tried and thought positively and just tried a bit more, something would have worked and we wouldn’t have been in pain – which we wouldn’t have been in if we’d just done it right in the first place. Have you tried yoga?

This means that accepting pain is really hard, because you’re not just accepting pain – you’re accepting failure, that you are a failure and your doctor is a failure. That’s a really strong thing to deal with – and really difficult to do, especially after you’ve had years of being told to try one more thing. It’s even worse if you’ve found something that is helping with the very worst (or at least making it possible to do some things), and you’re being told that you need to stop now – and your choices are: keep taking opioids and be an addict-failure, or stop and be a failure because you’re in pain. It’s not much of a choice.

There needs to be more discussion of the bind we put people living with chronic pain in. We need to talk more about how pain acceptance isn’t just one person going “I am going to be ok with this,” is is everyone else, and wider culture, going “We are ok with you as you are.” Pain acceptance – pain management – needs to be framed as the initial approach, even before a diagnosis is found.

And pain management needs to be accessible to everyone. It needs to be affordable – even free (let’s not even start me on health insurance, but needless to say, it should all be covered). It needs to not have long waiting lists, or for people to be excluded from trying something (if they want to try it, because they shouldn’t have to) because they live in a particular area, or they have another disability, or they have already had five sessions of hydrotherapy and that’s your lot. Pain management is about more than an individual patient and a doctor – it’s about a cultural shift.

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