Tag Archives: hypermobility

Taking pain seriously

I grew up hearing that I made a fuss about pain. It’s understandable in that what was going on with my body wasn’t really recognised  then, but still, it would have made a lot of odds if there had been a bit more kindness in the mix. PE at school was the worst – painful and also humiliating and with no sympathy at all. But, it wasn’t just school, and it included my doctor. I internalised the idea that I make a fuss and I learned not to take my pain seriously. Of course doing that means you can’t ask for help, relief, slack cutting or anything like that.

A few years ago, I saw a friend talking about hypermobility on Facebook like this was a thing that merited care and concern.  This surprised me. All of my body bends in ways it shouldn’t, but I hadn’t connected that with experiences of pain. I decided to educate myself, and discovered that hypermobility is a soft tissue issue. People like me damage easily, we feel more pain, everything takes more effort, and as a soft tissue issue it can impact on the gut and other things as well. It’s helpful when things make sense. It’s useful having some idea what to do to avoid hurting myself in the first place.

But more than this, it is validating of how I’ve experienced my own body.  I’ve experienced this information as permission not to be ok, and having spent the first thirty or so years of my life being given to understand that I make a fuss and must have a low pain threshold, this is a very big deal.

The pain is real. The pain is real enough that I am allowed to take it seriously. Taking it seriously opens the door to trying to avoid it, trying to get help, trying to manage it better. It also gives me space for the emotional impact both of living with pain and having internalised the idea that the pain I live with doesn’t matter and shouldn’t be taken seriously. It means considering that I’m not some kind of pathetic drama queen who over reacts. This is quite a shift in my self-perception.

Sometimes we do need permission. Especially if there’s been a big push in the other direction. Validation can be a powerful thing.  It’s another reminder that none of experience life in a vacuum. We’re all impacted on by each other’s words, deeds and ideas.  Wellness and healing are not isolated individual issues, they are community issues. The stories we tell each other about what our bodily experiences mean have massive impact, for well and woe.

I’m watching similar things happen around the growing recognition that trauma has real, measurable effects on the body. I think we’re moving away from old stories that hive emotions off as irrational and not situated in the body and that instead we’re moving towards recognition of people as complex beings where experience can impact on wellbeing.

We’re challenging the stories that are quick to write off some experiences as over-reacting – the medical profession does not have a good history of responding to female pain – and even worse if the women is poor, or Black, or all of those things. But this can change.  We can have new stories in which pain deserves care, and in which we don’t tell people off for making a fuss when they are suffering. We have to stop assuming that being a certain kind of person means something about whether we really feel pain or not  We can stop telling stories that block the way to getting some people’s pain taken seriously. We can do better and we can be better.


Breaking free from what’s normal

When something is normal, it is all too easy not to notice it. To change something, we have to know it could be changed – that it is not inevitable, or inherent, or intrinsic to how the world works. The things we think are normal are the hardest ones to see or do anything about. This is why people who are normalised to abuse stay in abusive relationships. It’s why changing our lives to be more sustainable is so difficult for many people. It’s why making the most useful personal changes can be so hard.

So, this is a story about overcoming something that was normal. I’m sharing it partly because it’s what’s going on for me at the moment, and partly because it illustrates how powerful normalness can be and how hard it can be to resist what we think is just the way things are.

In the last few weeks, I’ve had a major breakthrough and have started using supports, splints and making other changes to reduce the pain in my hands while I’m working. That all sounds obvious – you experience pain, you do something to alleviate it. Except… my hands have hurt for as long as I can remember. Learning to write, I couldn’t hold the pencil properly because it hurt too much. I found a work-around and spent my childhood being told off for my bad handwriting and bad pencil hold. At 11 I spent time in remedial classes where someone tried to teach me to hold a pen properly. That it hurt me to do so never came up and I never mentioned it because it had never seemed important.

Hand pain was there when I played the piano, and when I held a violin – the bow and my little finger especially. It’s there for typing and crafting, long stints working with the mouse are painful. Last year there were pages I coloured while crying because it hurt so much, but I didn’t stop doing the work, and I didn’t look for workarounds because for most of my life, hand pain has just been part of how the world works.

In the last few years I have, thanks to friends sharing experiences of hypermobility, started to realise this is something I need to take seriously. I have a massively hypermobile body – this is no doubt a large part of why so much of me hurts. My hands are intensely hypermobile. I can spread my fingers wider than is good for my knuckles. I’m now using hand supports, and taping to stop this happening. I’m using a splint when working with pencils so that I don’t push the knuckle on my right hand sideways. It’s a bit of a faff, but the difference is huge.

I am inevitably feeling a bit foolish for not having got into this sooner, but for me, hand pain was just normal. I did not believe that it could be changed, so I ignored it as best I could. What’s shifted for me in the last year is I think a consequence of doing Tai Chi and learning to better manage the hypermobility in my ankles and hips. Learning to make changes there, and getting so that I can walk longer distances without ankle support from a boot, has opened me up to change. That I have tackled the problems with my ankles makes it thinkable to change how things work for my hands. That’s changed how I’m able to think – which was the block to changing what I do.

One of the best ways to identify and challenge apparently normal things, is to talk about them. When we test our experiences on other people, we get a chance to query what might seem intrinsic. I’ve got to where I am because someone else talked about hypermobility and I realised the same things were true of me. What had been normal suddenly looked rather different. This works across the board. When we talk about coercive behaviour and abuse, there’s scope for other people to realise where they are. When we talk about cultural ideas that trap us in certain ways of living, there’s scope to break out. Dismantling what we think is normal is hard, and also key to making radical change and it is a project best undertaken collectively.