“You talk about it”

In his recent Conference speech Ed Miliband said that, as a country, we’re failing people who suffer from mental illness. I agree. I’ve even written about it. In saying we shouldn’t be afraid to talk about mental illness, though, Miliband said
“if you’ve got a bad back or you’re suffering from cancer you talk about it.”
It was said with the best of intentions towards people suffering from mental illness but the failure to distinguish between intermittent and chronic back pain indicates either a lack of understanding of or indifference to chronic back pain: how much stigma surrounds it; how uncomfortable it can make other people; what it’s like to be called lazy just because other people can’t experience what we’re experiencing. It’s hard to talk about it (hard to blog about it too but I think it matters enough to do it sometimes).

People with chronic back pain (and other forms of chronic pain) are often expected to talk about things we don’t actually want to talk about and to answer any question anyone asks about it*. That includes situations where it’s not just uncomfortable to refuse – when an interviewer or boss asks, even if they’ve got no right to, what do we do? Sometimes I wish I had rheumatoid arthritis, just because conversations would be done with so much more quickly if I had a two word easily recognisable answer. But I don’t. I have a nearly a decade of absolutely non-stop pain which has spread as the musculoskeletal problems have, and another decade before that where I was in pain for at least part of every day. Over half a lifetime of doing some things differently and not doing other things at all, of well meaning but often misguided interest and advice from some people, suspicion and accusations from others. When it comes to work and doctors I still feel particularly defensive as a result of past experiences.

Even when I’d often rather not answer at all, I try to be straight forward when I answer people’s questions, although they’d probably be amazed at how much I’m not telling them. I really don’t understand what compels so many people to ask. I’m not saying people are trying to make me feel bad. Most aren’t but, as I said, I had some really negative experiences in the past and talking about it without my hackles rising is hard. It’s not just that though. I really wish I could be defined by more than the fact that I’m in pain. My body is damaged. One part of my brain receives constant pain signals as a result. There’s so much more to me than that though and it’s frustrating to feel like what I can’t do is so often in the forefront of people’s minds. The great thing about clients is almost none of them know so I’m free of it when I talk to them.

What Miliband’s comment also fails to recognise is how often talking about it is a waste of time, how often we answer questions only to discover the other person wasn’t listening to a word of it or to receive the reply “I know just how you feel. I put my back out gardening on Saturday. It hurt like hell on Sunday”. For all the talk, it’s immensely difficult to get people to actually listen when we have to do things differently to manage a condition. Not to mention the fact that when people do listen it’s often with pity in their eyes and how humiliating that is.

He’s also failing to acknowledge that there are people who care about us and are emotionally hurt themselves by the idea of our living with pain day in day out, that those people might be overprotective and might not want to suggest doing things for fear of feeling responsible for causing us more pain (immediately or as a flare up). It’s so incredibly hard to talk openly about chronic pain with someone who cares, hard for them to understand that we decide to do things knowing they’ll cause more pain because it really is worth it to have a life worth living. It can be easier for us to pretend we’re not in as much pain as we are to protect them. For some people it’s also a matter of pride not to admit to the people they love that there are things things they can’t do any more so they don’t talk about it. They just keep on doing them and suffer in silence.

Does he know that these problems with communication are so common among people who suffer from chronic pain that it’s a requirement for patients at Addenbrookes pain clinic to attend seminars which include talks on handling other people’s attitudes and feelings and being assertive about managing pain. Does he also know how few holistic chronic pain clinics there are providing any help beyond steroid injections? What I would say if I was really going to talk completely honestly about it to someone else would be this:

“Accept it. Accept it rationally and emotionally. I’m in pain. I will be an hour from now, a day from now, a week, a year, a decade. Whatever you imagine that feels like, you’re probably wrong so it’s better not to try. Trust my judgement. I know what I need to do to manage it. I know it will fluctuate through the day and why. I know the things which make it significantly worse. I know what to avoid and how to minimise the impact when I can’t or choose not to avoid those things. Sometimes I’ll ask for help but often I’ll be proud and stubborn about doing the little things for myself. Trust me. The amount of extra pain they cause isn’t worth trying to stop me. If I need to, I will ask. I really will. I know when it’s worth a significant increase in pain for a few hours or days to do something that’s important to me. Some of those are trivial things. Some are huge but it’s my decision to do them. Just accept it all because if you don’t, you’ll never really know the rest of me.”

I never do say it though.

It was just one sentence in his speech but Miliband, inadvertently I assume, dismissed the problems people like me face. We don’t often talk about these problems with non-pain sufferers. If he wants to know how people with chronic pain really feel he should try visiting a forum full of chronic pain sufferers, all looking for advice and understanding. It might be easy to talk about an occasional “bad back” but believe me, it really isn’t easy to talk about chronic back pain.

* If you’re one of the people who’s asked me questions as a result of reading something about the pain on my blog or Twitter, I’ve made a conscious choice to talk about it here/there and by extension to talk about it with you.

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