That elephant in the room thing

This weekend I was incredibly fortunate to speak at Le Pub Scientifique (the next one is the super intelligent Tasha Stanton!) about one part of our pain conversation that’s absent: how do we have a conversation about when pain persists and doesn’t respond to any treatments?

I still don’t have any research to show how we might broach this topic in a way that respects the person with pain, acknowledges just how poorly our treatments do, and provides a framework for us to collaborate. It’s like this big bogey sitting in our clinics that we pretend isn’t there.

Why do we need to have this conversation?

Well, one reason is that our treatments are pretty poor and by ignoring this reality we’re sitting there with our hands over our ears going “lalalalala” as if by NOT talking about it, it doesn’t happen.

Another is that people living with pain are put through the most awful process of being offered something (hope!), waiting to get that something (waiting, waiting, waiting…life on hold…), getting it (ooh! exciting!), waiting for it to work (waiting, waiting, waiting…life on hold…), then finding it doesn’t help (despair!). Rinse and repeat. The time spent waiting alone is such an incredible waste.

As a result of us not being brave enough to talk about it, people with pain are often thought of as The Problem. They get blamed for not responding. Blamed by family, friends, other health professionals and funding agencies, insurers and case managers, and worst of all: their own minds.

In 2007 I hit my head and sustained a concussion. For 18 months I wasn’t working full time because I’d need to come home and sleep for at least an hour. Even though I knew that my symptoms were real, and that it can take time to recover from concussion, I spent hours worrying that I was “exaggerating”, “taking things too hard”, “not working hard enough”, “not motivated enough.” Believe me, these thoughts do not help anyone, and they delayed my recovery by pushing me towards a depressive episode.

Imagine if you’re a person with pain that doesn’t respond and instead of being given consistent messages about it as I was with my concussion, you’re being told “Treatment X might be a good option”, or “Have you tried Y?” or “Maybe another investigation might help us sort it out?”

How might that erode your sense of self, your confidence in your own experience?

Now I’m not suggesting we say to people “Guess what, your pain is going to go on forever” – that would be horrible, uncaring and unfeeling.

This isn’t the same as pretending that pain isn’t there, gritting teeth and “just getting on with it”. This isn’t about being resigned to a life of suffering.

What I am suggesting is that we help people to become less afraid of their pain, and to begin to start adding life into their life. That by taking pain into account we can begin to build patterns of activity that move us towards what we value – and I doubt that many of us value waiting for the next healthcare appointment. It also doesn’t mean that people can’t at the same time seek pain reduction approaches – I’ve certainly tried a bunch over the years, sadly none of them have changed my pain one iota.

When a person seeks help for their pain, underlying that request is typically something much more pragmatic. It’s about how much pain is interfering with important things the person wants to be able to do. It’s also about what the pain might signify – is it cancer? does it mean I need to change my job? does it mean I’m succumbing to old age or the legacy of being reckless as a young person? Clinicians often forget to ask “if pain was less of a problem for you, what would you be doing?” Clinicians also forget to ask what the person’s main concern is about their pain.

Addressing these concerns will, I think, help us move the conversation away from which set of exercises is better, which gadget might be new and groovy, which dominant voice should be listened to, and whether someone is “right” or “wrong” about an approach to helping people.

So perhaps, as we begin to recognise that our treatments are not very effective (despite the occasional win! Just like the gambler’s occasional win), we can work towards helping people with pain move towards what matters in their lives – with pain as a companion in the back seat, rather than taking over the steering wheel. And perhaps, somewhere along the way, there will be a place to stop to offload this passenger, but knowing that we’ll always carry the memories and thoughts of having had it as part of our lives. Pain has taught me so much! I am stronger than I think, I am good at finding wiggle room, and I am more compassionate towards others who are newer to the journey.