Words Matter

This week I've been thinking about how we use language in the medical world, and how this can cause more problems for people than we mean it to. I'm going to break down some of the more common ways in which I think our language fails us, and think about a way forwards which is less distressing for everyone involved.

If you've been reading this blog for a while you know that I'm a clinical psychologist working in physical health - specifically, working with people who have chronic pain. I've talked a lot before about how chronic pain works, but what I haven't mentioned is the language that we use around chronic physical health conditions.

If you've got chronic pain, especially chronic back pain, chances are you've had a scan at some point and you've spoken to a doctor or physiotherapist about the results. I want you to imagine that you've seen a doctor and she's looked at your scan and told you that you have something called "degenerative disc disease." What do you think you're likely to believe about that?

• "Well she said degenerative, so that means it's going to get worse over time"
• "It must mean that the discs are what's causing my pain - I'd better be careful not to cause more damage"
• "It's a disease - so it's not normal, and there might be a cure"

It would be completely reasonable and normal to think the things above, and guess what? You'd be wrong on all three counts!

There's so much going on here that I can't reliably cover it all in one blog post, but the things we know are:

• Degenerative disc disease just means that there are some age-related changes in your spine - the discs might have lost some height because they're dehydrated, or they might be rubbing together a little bit because they've worn down. This is normal. It's not something that anyone has caused, it's what happens when you get older. One of my physiotherapy colleagues refers to it as "grey hair and wrinkles on the inside," and she's right.
• Even though there is the word "degenerative" in there, that doesn't mean that it will get worse over time. Here, that refers to what's happened to the discs - they've started to degenerate, as opposed to when you were still growing. It doesn't mean that any pain experienced will get worse over time, or that someone will end up in a wheelchair.
• Here's the really tricky part - having age-related changes in your spine doesn't even mean that those changes are definitely what's causing your pain. Research has shown time and time again that scan results don't correlate well with reports of pain. If you scan people who don't have pain, lots of them have the same findings - degenerative discs, dehydrated discs, age-related changes. Sometimes you might have a dehydrated disc in an area that isn't causing you pain. And sometimes people with pain don't have any of those things when you scan them - that doesn't mean their pain isn't real. This post sums it up much better than I can, but long story short - scans aren't great at figuring out what's going on with chronic pain.

So why does this matter? It matters to me as a rehabilitation clinician, because when I meet people they've been given all sorts of scary words to describe their spines or other areas of their body, which really don't help them to make sense of their pain. It matters because once someone truly believes that their pain will get worse over time, and that it's not safe to be more active or even to move their back, it can be difficult to get them to change their behaviour. And well-meaning healthcare professionals who want to give people clear answers for their problems can end up making things much worse. Consider the below statements, all of which I've heard from patients time and time again:

"The doctor said he'd never seen a scan as bad as mine!"
"The physio wouldn't touch me, she said it was too dangerous"
"The hospital said I needed to be careful not to damage myself more"

The problem I have with the above is that the statement probably isn't true - if it was too dangerous for someone to move and bend, they wouldn't be seeing a psychologist in a pain clinic, they'd be having an operation. Also, EVEN IF the scan is the "worst" someone has seen (and I'm not even sure how we're classifying "worst" at this point), what good comes from telling the patient? The only thing that happens there is that you create fear. And nothing good comes from fear in this context.

So what do I think needs to change? Fundamentally, we need to start to change our language around what we can see on scans - "age related changes," "adult scoliosis," "normal changes relative to age" are all more reassuring than "you have degeneration in your spine." If we can be more positive and reassuring (after a thorough evaluation of course), we can help patients to feel more positive and reassured that change is possible, that we can help them to move forwards, and that they don't need to be frightened of their own bodies. And that, ultimately, changes lives for the better.