S3 E3: S3 Ep 3 – The Pain of Not Being Believed – When Your Symptoms Are Dismissed

So welcome to the Pain Free Living Podcast with myself, Claire Elsbie.

I'm a positive psychology coach and I also work with therapy.

And Bob Allen, finder of the podcast, who's an excellent osteopath.

Thanks, Claire.

Yes, I am brilliant.

I've been.

I was a massage therapist before that.

So the podcast is all about bringing you information that you may not be able to find elsewhere.

And Claire's going to do the introduction on this one.

Yeah, so we discussed various topics for our podcast.

Obviously you'd expect us to do that.

And this one is about the pain of not being believed.

So that's.

Yeah, that's tough.

That's a tough one.

So in terms of our mental well being, there is a direct emotional impact of being dismissed.

Obviously it depends how it's being done.

But if we are not believed, that can lead us to feel not heard.

We can actually feel quite small physically and mentally, and we generally feel that we're not enough.

And all those feelings play into our self worth.

Not only that, does it shake our trust, our confidence in the medical system and the medics themselves.

And this is particularly hard, I would suggest, if you're a neurodivergent individual, because actually one of the research shows that one of the common values in terms of neurodiversity is a sense of justice, and this plays straight into that feeling of injustice.

So there's not only that feeling of, you know, undermining our self worth, but there's also this.

It's just not fair.

So these are the ramifications of, in terms of our mental well being, I think, of just not being believed.

How does that manifest itself in terms of physical health?

Yeah, I mean, I see a lot of people in pain, obviously, and of that number of the number of people that I see, there are quite a few who have pain, but they've gone through the GP process, they've gone through potentially other physical therapists and nobody can find a reason for it.

So, you know, depending on what the cause of the pain is, if it's low back pain, for example, and they've gone through the process, they've had an MRI scan, every test they've had done is clear, there is no obvious cause of their back pain, then they tend to be not, I don't want to say dismissed, because gps don't dismiss, but they tend to be almost left to their own devices.

You know, we've tried everything.

Nothing's worked for you.

So keep taking the medication and hopefully it will go away.

So then, or worse, it doesn't happen so much now.

But back in the.

In the olden days of 10, 15 years ago, people were often told, we can't find a.

We can't find what the problem is.

So the pain's all in your head.

That's it.

And they were dismissed.

And it's.

And.

But, you know, people.

People are in pain.

The thing about, the thing about the brain, the brain is it's a monitor of the body.

It's a monitor of where the pain is.

If somebody comes to see me and they tell me that doing some.

Doing this particular movement or doing this hurts, then I'll believe them and I'll treat them.

I saw somebody recently who was getting knee pain and thigh pain.

Now, based on the symptoms, it was very much like a particular condition, an iliotibial band issue.

But I did all the tests, standard tests for that problem, and every one of those tests was negative.

Who will do this?

Does that hurt?

No, we'll do this.

Does that hurt?

No.

But actually all the symptoms were for that problem.

So what I said to them, we had the conversation.

I said, well, look, this is what I think it is.

The signs and symptoms are that it is this.

But the tests are not, you know, the tests aren't 100% accurate anyway.

But the tests did not confirm that diagnosis.

But I treated them for that anyway, and they were quite relieved that they had a potential solution to the problem.

And, you know, as all good therapists will do, if you have a problem that I believe is caused by this, then we'll treat that one or two sessions.

If it makes a difference.

Yeah, we were right.

If it doesn't make a difference because pain is complicated, then we'll try a different approach.

So I never dismiss anyone, even if I cut, even if.

Even if that all the tests are negative, I would still work out, spend more time working out what may be the problem.

And I'd be open and honest and say, this is what I'm going to try.

This is what I think it is.

Let's see what happens, and we'll see what happens.

So some of the people I've seen who have had pain for a long time, they've been told that there's nothing they can do or they've been given, and this has happened a few times where they've been given, they've shown Me the letter from their consultant.

And the letter says that they have degenerative disc disease, that it's causing this problem, this problem, this problem and go away.

This is what's going on.

Your spine's going to get worse.

It's never going to get.

Nothing's going to improve it and sent away.

So that induces this thing called the nocebo effect, which not many people have heard of, but everybody knows what the placebo effect is.

The placebo effects is where you give somebody an inert treatment.

In other words, there's no, it has no medicinal value or no, it has no medication in it like a sugar pill or a saline injection or antibiotics and people will feel better.

That's measurable.

There's so much research that shows that the placebo effect works, that it is a real thing.

We don't fully understand the mechanism, but we know that the placebo works.

The nocebo is the opposite to that.

And actually placebo doesn't work for everyone.

We don't know why it doesn't work for everyone, but it doesn't.

The nocebo effect is pretty much 100%.

If you tell somebody that they have degenerative disc disease, they will feel worse because they eventual image of a crumbling spine.

So not only do they feel worse because they feel their spine is crumbling, they will potentially feel the spine crumbling.

They don't, but that's what they think.

You know, medications won't work.

It increases their stress levels.

Increasing stress increases your sensitivity to pain and you go down this whole road of just by giving somebody bad news, it triggers the nocebo effect and their brain goes off on.

It's the worst thing possible.

So language is important.

Language is really, really important in terms of pain management and yeah, that's it from a physical perspective.

Sorry, I stalked a little bit for that one.

No, no, no, no, no, no.

That's it.

From a physical perspective, the language is so important.

I think language, information and knowledge.

Because you said about not dismissing and you didn't feel that the DP would dismiss and I would agree with you, but it depends on how.

It's a perception of the person receiving the information and if they feel they've been dismissed, and it could be that it's only because the GP's got a 10 minute appointment and the next person's knocking on the door, they feel dismissed.

So.

So it's about how the information is delivered.

It's also about understanding that you can have a situation where your autonomic nervous system is potentially sensitized to pain.

And when that happens, we can have pain without actually anything showing on our scans.

Absolutely.

Yeah.

I was gonna say scans is a whole.

A whole podcast for me.

The medical profession puts a lot of credibility on scans.

But if you take.

You could take.

It's like 100 people.

You could put them all through MRI scanning machines, and it would show up degenerative discs, it will show up herniated discs, it would show up osteoarthritic knees, bone on bone.

And, you know, it would show up a whole range of physical issues.

But in that whole range of physical issues, you would have some people with 10 degenerated dissimilar in their.

In their bats, so in their lumbar spines, but there's only five.

You know, you could.

You could find lots of people with lots of physical issues that show up on imaging that are in absolutely no pain at all.

But equally, you could find a number of people who are on show who have no signs of any kind of degeneration whatsoever on an image, but they're in agony.

There's no direct correlation between what you see on an image and the level of pain that people are in.

So there's an over reliance on imaging and even more of an over reliance on imaging showing why.

Why a person's in pain.

So that's a big thing for me.

And I will do a whole podcast on imaging benefits of and why you should take all of that stuff with a pinch of salt.

Really?

A pinch of salt?

A big pinch of salt.

Oh, my goodness.

Okay.

I mean, I do understand that we can have, you know, our brains, if they feel threat, threatened, or unsafe, that then they can actually generate feelings of pain.

So you just don't know what context people are in whenever they're coming to you or in this scan machine or whatever.

You don't know what else is going on for them.

So no pain.

Let's just say pain is a fascinating one.

And that brings me on to the one that I did say that I would talk about, and that is phantom limb pain.

So phantom limb pain is where someone has had a limb amputated, and it may happen immediately after amputation.

It may happen weeks, months, years later, but they experience.

So say they've had their left arm amputated at the elbow.

Phantom limb pain is where they have excruciating pain in their left hand.

Oh, my goodness.

So there is no hand, and yet they feel excruciating pain in that hand.

And then you think, well, yeah, but there's no.

There's no hand, there's no nerves.

How does that work?

How it works is that the brain has a map of the body, so it's called a homunculus.

I will put that in show notes so you can go and look it up.

But it's a representation of the body mapped in the brain.

So what happens is, although there may not be a limb, the connections for the limb in the brain are still functional, operating.

We don't know what the trigger is for that phantom limb pain, but to all intents and purposes, the pain is coming from that hand.

Now, that's fascinating in itself.

Yes.

What's even more fascinating is how they resolve it.

One of the ways they resolve it is using this thing called a mirror box.

Now, a mirror box is where they put their right arm in.

And because it's a mirror image reflection, it looks like it's their left eye.

Oh, my goodness.

So what they can then do is they can.

Then they can stroke the hand.

They can do things with the right hand, and the brain interprets the information as if it was coming from the left.

There's an even more fascinating video, and I'll see if I can dig that one out, where they use a mirror box, put somebody's hand in it, and then what they do is they stroke the hand and all the rest of it, and then they get a big hammer and then they go to the image and they are hit back with the hammer, and the person feels a pain in the.

In the hand that isn't there.

The brain is a wonderful thing.

I'll see if I can dig out the show notes for that, because that, again, that's another whole episode of phantom limb pain, how it works and those sorts of things.

But, yeah, we digress.

Sorry, Per.

Well, it just proves that, you know, it is our perception of reality.

Oh, yeah.

So, you know, and that applies to our thoughts as well.

You know, what we think isn't necessarily true and our whole belief system.

But I could do a whole podcast on that.

There are so many more podcasts branching off.

There are so many podcasts, if you do.

Yeah, but yes, so that this one was all about.

It's about the pain, and it's about having pain and not being bullied and how we would manage that.

Yeah, so you would do it from one perspective, you do it from another.

But the key thing is it's about understanding that pain does not necessarily have a physical source and doesn't.

And it's how we would manage that.

You know, so if somebody came to me and I thought that their pain was not physical and I needed support from someone else.

I'd refer them to yourself because I know a lot, but I don't know everything and anything that kind of moves into the realms of mental health and therapy.

I would absolutely defer every time.

Thank you, Bob.

You're welcome.

Thank you.

But it is, it is about looking at our belief system and our.

The way we live is governed by three things, really.

It's our values.

So in other words, I guess how we let other people, how we would like other people to see us, our belief system and our habits.

So we are the sum of our daily habits.

So those three things intertwined is effectively how we show up and how we are.

But our belief system is huge within that.

And our belief system doesn't.

Isn't necessarily based on reality.

What is true.

And that's where we would start.

Exactly.

But it's like you said, it's what you believe to be true.

That's where we would start with that.

Okay, so I think we've bounced off a lot of different angles on that one as we draw this one to a close.

We've been, we've covered a lot of things as always.

Got any questions, got any issues?

If we've raised anything that's resonated with you and you'd like to know more, then yeah, leave something in the comments and you know our emails are there.

Get in touch, we can have a chat and see if there's anything we can do to help you.

And on that note, hope you've enjoyed the podcast.

That's from myself and my co host Claire, and there'll be another one along shortly.

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