Chronic Pain and the Isolation No One Talks About

The other is very important, but in anything actually. But you can only advocate for yourself when you've got the energy. You can't when you're really in a bad space, when you're in a flare-up. So again, it'd be good to have someone who understands you then. 100%. And also to have a flare-up plan. And a flare-up plan is really important if you— and everyone has to develop their own individual flare-up plan. But when I'm having a flare-up, these are the things I need. These are things I need to do for myself. These are the things I need from you.

To give our listeners a bit of a hint, what does your flare-up plan look like?

First of all, articulate. It's less complicated now than it was. It involves exercise, you know, gentle exercise. It involves eating well, and not necessarily just because eating well, we all know that's a good thing. It's because I know I'm doing something good for myself.

Hello and welcome to Beyond Diagnosis, a podcast to raise your awareness, decisions, and voice for alternative practices so you can take back control of your health. I'm Rita De Michele, your host, a mindset and empowerment coach, and the founder of the Onus platform. Join me each week so you can create The stigmatization of chronic pain is widespread, leaving people frustrated and alone. If this is your experience, then today's guest, Dawn McIntyre— Dr. Dawn McIntyre, clinical counselor and health advocate, is actively changing the healthcare landscape for chronic pain sufferers. Welcome, Dawn.

Hi, thank you, Rita.

Sorry for the little muck-up there. I almost slipped and didn't put the Dr. Dawn in it.

I'm still Dawn, whichever way you look at it.

Yeah. Wonderful. Dawn, when someone has chronic pain, which are so many people, or invisible illness, being believed can be an uphill battle and very disempowering. Why is that happening to people?

Wow, that's straight into it, isn't it, Rita? It is. First of all, invisible pain is a really interesting statement because sometimes it's referred to as invisible pain, sometimes it's the silent disease. And if you— anyone who knows me or lived with me, you, you can see it on my face when I'm really in pain. Um, and when, when the pain hits, I scream. So it's not always silent. And it's not always invisible. But there are times when If you're lucky enough to be at a stage where you're managing your pain better, that it appears in that maybe moment or that day, if you're lucky, that you are just like everybody else. But rest assured, many of us are constantly living with chronic pain 24/7, and just sometimes it's a lot worse and less manageable than others. And actually, when we talk about how many people You know, we're talking about, about 33% of people over 60 live with chronic pain and about 20% of people under 60. That's a lot of people. And there's about 70% of people in the workforce, about 20% in the workforce have chronic pain. So we're talking about almost not so much a silent disease or an invisible disease, but numbers of people that we don't realize are living with chronic pain. And just to be clear, to be clear what chronic pain is, um, there is a bit of kind of discussion over it, but in the main it's pain that lasts, persists over 6— for over 3 months. Some people say 6 months, but in general it's over 6— over 3 months. So it's ongoing pain that just persists. And can you imagine that when pain persists It's exhausting.

Mm-hmm.

Number one, it's exhausting. It is frustrating because you can't do the things you normally do. There are so many things in my experience that have happened. So, you know, if your body hurts, for example, if you're lucky enough to have a partner who wants to give you a hug, you know, very often, like in my experience, I would push Neil away because it would hurt when he touched me. So you have these And that happens often. So my pain is very up and down and very consistent, but sometimes more than other times. And so you can imagine what that could do for relationships when you're constantly tired, when you don't like to be touched, when you'd love to be touched but it hurts to be touched, um, when you make arrangements with friends and you have to cancel, or you go and then— I've got a, um, we'll get to the fact that I wrote a book a bit later, but there's a couple of very funny scenarios in there when I look back. They weren't funny at the time. For example, when I got stuck in the frozen pea aisle of Coles, um, when my back just went, you know, frozen peas and me have an interesting relationship now.

You thought, God, it could have happened anywhere a bit more glamorous. No, it's got to be with frozen peas.

I wasn't even near ice cream. Come on, it was just frozen peas. Um, and, and how that impacts on that friendship and the confidence of that friend to come out and do things with you And how stupid you feel in public when, for me, when that happens, I drop to the ground, I vomit. You know, it's not a nice situation. And I never quite know when it's gonna happen.

Mm.

So there's a lot of stuff around it. It is known as a kind of, the best approach to pain is a, we were mentioning earlier, a biopsychosocial approach. So it's looking at what's happening in your body, what's happening in you emotionally, and what's happening for you socially. And all of those things impact our ability to live with chronic pain.

You mentioned before in, in the beginning that the numbers are huge, and, you know, more so after 60. And that is so upsetting to hear because you've worked all your life, you're heading towards retirement, and then you end up living with this chronic pain when you should actually be enjoying your life.

Yeah.

So that goes back to what I asked in the beginning. Even though sometimes you, like you were just saying, you have good days, you have other days that aren't that great, sometimes you can't tell that you might be a chronic pain sufferer. But why is it with— why is it still so hard for someone to be believed that when they're actually at a medical appointment, or even alternative functional whatever appointment, You're really trying to get across how you're feeling, how much pain you're in, but maybe the scans and tests and that are not equivalent to what you're saying. Why can't they just believe that what you're saying is true?

I think there's a few things here, and I think this is probably so critical for people to feel validated and believed, is that first of all, when you go to a doctor, it's a medical model. And pain is not only a medical model. Pain, as I said, is to do with your— so many things— your culture, your religion, your relationships, your people that you've got to support you. So, so many reasons. Your personality type. I mean, I'm very lucky. I have what you call like an A-type personality, so I'm naturally a very positive person. But, you know, there was a point— the reason my book is called From Okay to Despair and finding my way back again. I got to a point where I did not want to be living with this pain anymore. I was that desperate.

Wow.

And yet I'm a very positive person. And so I think if the job— if your doctor didn't know you before your pain and you're just presenting with that pain, I think that's a major issue. That's the big thing, because they didn't know you before pain. And I often find that very frustrating. Very, very frustrating. The other thing is, if you're walking into the doctor and you're managing to just walk in, and it's not necessarily your worst day— and if it was my worst day, I wouldn't be walking. I mean, like the other week, I was completely unable to walk weight-bearing, for example, but I wouldn't be going to a doctor because I can't weight bear.

Yeah.

They don't see you like that. So it's very difficult for them to really appreciate. And also, doctors tend to work in a very siloed space. In fact, unfortunately, and that's the beauty of these kind of conversations and your, um, all of your messages that you give out throughout all of your podcasts, Rita, is we need to stop siloing. We need to work in a holistic way.

Yeah.

Um, and realize that our body isn't just a medical instrument. The way we think impacts the chemical exchange in our body. impacts the danger signals that happen in our body and therefore impacts the way in which we perceive pain and various other things, trauma, all sorts of things. There is a well-researched intrinsic link, and yet it is very hard to find someone who practices within that kind of shared model. So I think that's the main reason it's a problem. And when you're not believed and you're not validated, That takes you more into yourself. You feel more stigmatized. And once you start feeling low and depressed, uh, some of our listeners may have heard of the polyvagal theory. And it's so very important that when we are low and depressed, we're in that kind of dorsal vagal activation, which is really low, huddled up. I can't cope. I can't, can't bear this. And then, and the next one is like that feeling of unsafe. You know, you feel unsafe, you feel not believed, you feel— disenchanted with the world. But what we're aiming to do in supporting people with chronic pain is getting to what's called the ventral vagal, um, area where you—

Before we continue, can you just give the listeners a quick overview of what polyvagal and ventral vagal actually means?

Yeah, yeah.

So they can understand, you know, what you're talking about.

Yeah, so we have a vagus nerve, and so what we— the way in which our nerve is activated, um, depends on our mood. And so, yeah, it's very, very controlled by how we feel and the environment around us.

It's the main— it's the main big nerve that goes down our spine from our brainstem down our spine. Spine to brain.

Mesenteric goes from spine to brain. Yeah. And so, and we can learn. One of the big things about learning to live with chronic pain is, A, understanding. And we won't go into that here today because we haven't got time to do that, but understanding how pain works because we don't actually have pain signals in our brain. We have danger signals that's in the amygdala of our brain, and that danger signal then either goes in one of many directions. For those of us that live with chronic pain, it becomes more often translating into, I'm in pain, but it's not a pain signal per se.

That's fascinating.

It's quite complicated. We won't go into that now, but the important thing to know about that is if we can stop ourselves allowing that danger signal to get further up the message process, then we can help start to manage our pain. And that's definitely been my key. And one of the ways in which that's really important, we talked about that biopsychosocial.

Yes.

We hold ourselves, our posture even, giving ourselves a sense. See, see how I'm sitting up in a very well-supported chair, by the way. And if we can sit up straight and open up our, our chest really, and put our head up a bit, it gives us a sense of confidence. You know, when we're like this, we tend to feel, you know, we're protecting ourselves. We've got that protection space. If we're like this, it's more of, I can do this space. And you fake it till you make it, because that's something I've practiced and practiced. And it makes a very, very big difference.

Yeah, for our listeners who are not watching this, you were actually— the protection, you were bent over forward, and for the confidence, you were sitting up straight in your chair.

Sitting up straight with kind of weight down into my spine, shoulders back. Yeah, yeah, it makes— I think it's the best takeaway. If anyone could actually— actually, hopefully there'd be more takeaways, but people practice that feeling, that sense of I've got it by just changing your posture. That's a massive plus.

Wow. Yeah, great tip. So what, from your experience— because you do live with chronic pain— yeah, from your lived experience and what you could possibly give to our listeners and, and viewers, what are some of the challenges with living with chronic pain?

Yeah. I think the isolation and the not being able to do the things that you want to do. I wonder, can I read a little segment from my book? Because I'll—

Yes, please.

Because then, so the book's Living with Chronic Pain, lots of little earmarks in it as you can see. But let me just get to that bit. So some of the challenges, some of the things And by 2014, the pain was so debilitating, so dehumanizing, that I felt like I was losing my grip on life. And the pain monster found a new friend, a sadness monster, an isolated being who no longer looked, sounded, or behaved like the person my family and friends once knew and loved. It was hard to believe that I could become so medically pathetic and that the medical profession couldn't help me. It wasn't any wonder my family and friends doubted the truth of my situation. Well, maybe they didn't, but I had a fear that they did. After all, I had tried everything and nothing was helping. In 50 years, I had had more than 20 major stomach and spinal surgeries. Between 44 and 59 years old, I had 25 hospital admissions. Each time I told myself that I would wake up a new person, that I would be free from not knowing when the pain was going to strike. You see, the old me, the then Dawn, was always positive, always believing that things will turn out for the best. But today, 12th of June, 2014, I hate that my bedroom is full of painkillers and bedpans rather than candles and pretty lingerie. The then Dawn had disappeared. Yesterday was the day I decided I didn't want to live anymore. Somehow I survived yesterday. Today I pray that I face a new beginning, yet I find myself facing more of the same. I can't shake that slow, insidious realization that I have lost everything that matters to me. My ability to work in a job I once loved, my relationship as I had known it with my husband, the simple pleasures in life like enjoying time with family and friends. Sipping hot mochas at seaside cafes and taking long walks on the beach with my dogs. I wanted my life back, but it had disappeared.

Wow, Dawn, that is so deeply moving. And I think it really— just that what you read there encapsulates how so many people living with chronic pain must be feeling. And you've put it into those words so beautifully. And really, anybody who doesn't have— I hope anybody who has chronic pain who hears this episode can share it with family, friends, or even their doctor, just to listen to just that passage, so they can understand, this is how I'm feeling. This is the grief and loss I'm experiencing.

I think grief and loss is such a key. So I wrote my book, and I make it very clear this is my journey. And everyone's journey with chronic pain, as everyone's journey with grief and loss, is different. But what's interesting, you mentioned grief and loss, is my doctorate was on stigmatized child death, was on grief and loss.

Hmm.

It wasn't until I found myself in this situation, 'cause I lived with chronic pain my whole life, but I had this massive flare-up in, in 2013 that caused everything to come tumbling down. And I managed the pain on and off in and out of hospital all that time. It was just my life. But then this big bang happened, I guess. But I think the reality of— I've lost the thread of what I was going to say then. I completely lost the thread. Sorry. I just—

That's okay. It was— well, we were mentioning about the grief and loss.

Oh, yeah. Yeah. So realizing for me how much I had lost and how long it's taken to regain, A, the confidence and the connections with people. Now, some people were there the whole time and were brilliant, and others were less patient, understandably, understandably. Again, in the book. So I wrote the book to help people, and then the response that I've had has been exactly what I hoped. to help other people read about my experience and maybe have some relationship to their experience. But what's happened, I had a lovely mum contact me in tears, good tears, good tears, and saying, I now have a relationship with my daughter. Your book has helped me understand so much more what she goes through. And we sat down and spoke about it for the first time in years. And now I get it.

That's amazing. It sounds like it's really empathy building, which is, you know, much needed, especially with chronic pain. My mother lived with chronic pain her entire life. And, you know, seeing her suffer and not always understanding, you know, I really now look back on, gee, what she went through emotionally on top of everything else in life.

And you could be such a grouch. It's really hard. It takes effort. It's so exhausting not to be, you know, grouchy.

They say that pain changes you.

Oh, it can do. Look, and it— in many ways, I am so much more grateful for my life than I was before. Consciously grateful, probably consciously grateful. And I think age helps that too. You reflect back and there's that wisdom of age as well, one would like to think. But I— when I have a day that's been more manageable than others, I actively articulate to my husband, this has been a good day. I'm good because I am so grateful for when it is, when I've been able to go out and do things, when I've been able to go and walk the dog, for example. Yeah, it's good. It's good.

That's a good practice. Definitely a good practice. So what are some of the things that you would like to see handled differently in the system?

In the system? In the medical system?

Or in the system or with families and friends, you know, with people that are suffering.

Probably 2 separate things. I think one in the medical system I'd like, and it's starting for it to be less siloed. But, you know, to be honest, when people train for years and years and years, there's only so much time that they've got to train. And I get that, I get that. But I think particularly the emergency departments, I had some awful experiences in emergency department. And if Neil, my husband, had not been my advocate at the time, I would've been so lost. And I'm lucky to have someone who is my advocate. Because when you're so unwell, you can't speak, you know, your brain, you've gone into into your emotional part of your brain, not your, you know, your prefrontal cortex shuts down. You're totally in your emotional part of your brain. And, you know, someone says breathe. I mean, I had an experience in hospital in the ED where, you know, they were, and there's some funny things in there too in the book. There's some funny experiences where I hallucinate with the drugs and, you know, I see green monsters and things. So there's a few funny things in there. Wasn't funny at the time again. But, you know, go to emergency department and to be fair, I wasn't dying. So emergencies, I, I get you triage, but I was in incredible, incredible pain. And they say, just relax, just breathe. And you know, I wanted to kill them because every breath hurt. You don't think I was trying to relax? Now, if somebody had sat with me, held my hand, sat in my space and helped me calm down, because I was so stressed from the pain. And when you're in pain, you hold yourself. When you hold yourself, you get more stressed and you get more, more tension, you get more pain. It's a vicious circle. But every time you try and relax, certainly for me, again, for those not watching, you can— I'm tensing and then I'm kind of relaxing, um, is that that triggers more pain. But if someone had sat with me and helped me calm down, so if they learned gentle breathing techniques they could do with me, or suggested put on a little meditation music or something. It may have helped me calm my system and then be able to articulate what was going on rather than be a blathering mess. Um, they also— the concern is that they think very often in ED, they think you're just coming in for drugs. And, you know, they have a lot of addicts who come in for various reasons showing. But so that's very tricky. So I would love a better ED kind of training in regard to managing chronic pain. I really do, because I think that's, that's so important. Um, I would love people to understand better that it impacts every part of our life.

Right.

But again, the responsibility of that, to be perfectly honest, Rita, is also on the person who lives with pain to share that and say, this is what I need when I'm whatever. So if I've had a really bad night with pain, I always say to Neil, darling, I'm grumpy. I'm trying to get out of it, but this is because I've had a bad night. He usually knows that because, you know, I've made him uncomfortable too, um, tossing and turning. But, you know, it is important for me to articulate. It's important for me if he goes to give me a hug, I go, not now, but I do love you.

Mm-hmm.

You know, there are things that are very important for you to have responsibility. And I talk about that in my book.

And, you know, you to have responsibility That was, yeah, that was something I was going to ask a little bit further down, but let's go to it now. Um, about advocating for yourself requires someone to feel confident in their ability and know how to, uh, speak up for themselves, whether it's with family or whether— yeah, the boundaries. I think boundaries would be important with chronic pain.

There's the, you know, that there's the psychological side As well as the actual, yeah, it's good to eat, right? And I'm not saying sometimes when you're having a, you know, a pity party— and let's face it, for those of us that live with chronic pain, we have quite a few pity parties— and that's okay because it's real and it's valid. And we have to sometimes be allowed and allow ourselves to go, you know what, this really isn't fair. I can't believe it's happened again.

Well, it's kind of being honest to yourself as well. You can't hide it. You can't always fake it or not be authentic to the fact that you do have this pain and you are living with it. Why say that you're not?

Yeah. And therein lies a whole other conversation about behind the mask. And I think we have to be authentic to ourselves, but also we have to get on with life. So I time frame my pity party with chocolate or crisps. Let's face it, you've got to have a buddy there. But then I go, okay, enough, Dawn. But, but also, if you've got to show up for something, and if it's possible— I mean, there have been times when I've had a flare-up where it would be, I can't talk. I mean, for me, I had times when my husband had to feed me, toilet me, um, you know, for a couple of years. So that was— it was impossible to do anything else. But now I'm where I'm at, um, I have to very often put on a mask. And again, in the book, I talk about a time when I'm a keynote speaker at a conference the weekend before COVID hit, and my back was just a disaster. About 3 o'clock in the morning, the morning I was doing my main keynote, and I was vomiting, and I was just in such a state.

Mm.

And, um, Neil was with me because I hardly ever drive now for obvious reasons. And, um, and he went out at 4 o'clock in the morning looking for a chemist to be open to try and find me something Anyway, I showed up. Nobody knew about it. I somehow managed to put that mask on and do what I had to do. Um, but it's amazing how you can sometimes, but if you're in a massive, massive flare-up, you can't, and you have to accept it that you can't. So it depends where you're at in your journey of managing your chronic pain.

So it sounds like When you've got chronic pain, it's a matter of depending what you're doing. From what you're saying is sometimes you have to put that mask on.

Yeah.

And then you have to know when to take the mask off though.

You do. It slips off often. Usually when that event's finished, that's it, I can sit. But I think it's developing as positive an attitude as you can. And whilst I don't believe in comparing ourselves with, look, I'm so lucky I'm not I'm not paraplegic. I was going to call my book I Wish I Was in a Wheelchair. Oh. Understandably. And the publisher said, I don't think so. And I agreed because I didn't want to insult people, obviously, who were in that situation. But the, the point of that was, if you've got your arm in a cast or you're in a wheelchair, people get it. They see it. They have a different—

That was the invisible that I was talking about. Yes.

Yeah. And also non-disease-related chronic pain, which is what I refer to as, as my pain. And many other people who scans and things don't show up something, or you haven't got, thankfully, cancer, diabetes, some of those other, you know, that you wouldn't wish upon anybody. But they all have an understanding. They're not stigmatized. It's, it's, people know there's support. I'm not saying it's a nice journey or anything, and I'm not comparing, 'cause you never compare pain, you never compare grief. Yours is yours, you know, and mine is mine. But it is less stigmatizing than having chronic pain that you can't quite put your finger on. I have a disability badge in my car, and I have had people come up to me and abuse me.

Because you don't look disabled.

Well, because sometimes I can walk out the car and I'm fine, but But I could get 10 steps down and not be fine. Another time I could walk out the car and I'm not fine. Um, and that's part of why I've got my disability.

Well, I actually, before doing the research around this, this episode, I had a look on Google and it actually said that chronic pain is the most stigmatized condition in the world.

So in my— we'll mention it a bit later, but I've developed a 3-hour training program, online training program for both people who live with chronic pain, but also for practitioners so they can be more understanding and appreciative and understand how to sit in someone's space in their chronic pain. And one of the things that I talk about there is the pain iceberg. And many of us understand the iceberg concept, but basically you just see the tip of the iceberg. You know, that's what everyone sees. And underneath all— think of the Titanic— underneath all is, you know, a whole lot of stuff going on for everybody, and nobody sees that. Nobody. Well, that's not fair. Some people see it who you let in and who are close to you and who are receptive to seeing it.

Yes.

So, you know, that iceberg is a very important conceptual conversation to have really for everyone. This is how I present, but this is what's happening for me. And again, I really encourage people to try and have those conversations, and they're difficult ones. Until I wrote my book and until I did my training program, there was nothing out there about living every day with chronic pain.

I think one of the things that We were talking about before is you help— a lot of your work is around identifying the gaps in support. Support is so important for people living with chronic pain. And I think— I can't say— I don't live with chronic pain, so I don't know what it's like, but I can assume that getting the right support and enough support could actually be quite a challenge for people living with pain.

Very much.

And there must— and for you to bring it up, there must be— you must have identified the gaps in that.

Yeah.

You speak about that.

Yeah. And that's why I wrote the book, was the gaps in support, because people weren't talking about the daily stuff. And it's the daily stuff that we live with each day. So it's how to get through each day. What are the kind of things? So I went to a number of pain programs, some as an inpatient and others as outpatient. And Look, people have different experiences of them. Mine weren't that great, partly because when I left the pain program, there was no continuation and follow-up. But there is one person who I would say saved my life. And when I do PowerPoints, and in fact my PowerPoint is on, is available for people to look at on the 3-hour training program and to use as much as they like, is I had one brilliant, brilliant physiotherapist. Her name in the book is Sharon. It's not her real name, but her name in the book is Sharon. And she sat with me. I was in and I was just beside myself. And I was, I was an inpatient in this program. And she sat with me and I was teary. And I'd gone to the physios and they were trying to get me to do things that were just so painful. And I felt like it just In fact, I just said to one, you just don't understand. You don't get it. You just don't get it. And then I felt that they felt I wasn't trying hard enough, so I felt worse. So there was a gap in their understanding of not just the physical side of my pain, but the whole frustration and the desperation and the sense of not being believed that I am trying to get better, but I can't do this, you know.

Mm-hmm.

Um, she sat with me. And she held my hand and she said, Dawn, what do you want? What do you need? And I said, I want to die.

Wow.

And she sat with me and she let the tears flow. And I'm not a crying person. And she allowed me, she allowed me to let it out. She allowed me to say what I really needed because I was fed up with people telling me what I should do and what I should not do. when I was struggling to do those things.

Yes.

And it was almost like feeling like saying to them, do you really think that I'm enjoying this? You know, I used to be— I used to fly to different countries. I was a keynote speaker a number of occasions, you know, overseas, in the States, in Europe. I had a really good career, a really, really good career, and it fell apart. Do you think I'm loving this? And yet that's how I— actually, I can hear my voice now. I can hear the irritation that I am sure many other people have, like, this isn't the life that I chose. But when she sat down and she sat with me in my space and listened to me— and to be honest, when I reflect now, I didn't want to die. I just didn't want to continue living that way.

You just didn't want— you wanted the pain to go.

Yeah, well, not just the pain. Yes, I wanted the pain to go, but I wanted the way my life was turning out because of the pain and how I felt a burden to everybody. I felt a massive burden to people who I had before been someone who was the go-to person became the, you know, I'm in need of all your support person. And look, many people unfortunately are in that position, uh, and in that position permanently, um, and they have to adjust their whole thinking, their whole psyche. So we need to work with people's psyche.

Yes.

Their physical thing is— so there are many people who have, you know, really, really long-term permanent disabilities where they have to rely on people. You know, there's no choice, but they have to create a different mindset. A— when I was reading before, I think I may have touched on the then me and the now me. I refer to the then me and the now me. Yes, I can't be who I was before, or I can't do the things I did before.

I can't.

But I can do some other things.

That, that, that letting go acceptance of who you are now and letting go of maybe dreams, aspirations, or the way your life was, that really does take someone down— can take someone down a dark path. And that's where he's saying you need the emotional help, you need to find someone. So this is that sort of— I've spoken to other people on the podcast who've had cancer, etc., and they say once the treatment's over, then what? I'm on my own, you know. And this is kind of the— is this the gap that you're talking about? That once you've been identified you have chronic pain, um, they've done what they can with you, or they send you off to a physio, whatever. There's so many gaps there. So can you, can you give some advice to someone who's feeling lost? They've got chronic pain, or they've They've just developed it. They don't know where else to turn or what to do.

And to be honest, that is the reason for my— for our online training program for clinicians and not just counselors, hopefully psychologists, social workers, physios, people who can get a better understanding of what it's like to live with chronic pain because there aren't many of us around. I do a lot of work with people with chronic pain. for obvious reasons. Um, but there are people say, I've been looking for years to find somebody who gets it, who understands. And whilst you don't necessarily have to hopefully live with chronic pain yourself to understand it, it is so important to get training in this whole holistic approach. As I say, I'm going back to that biopsychosocial approach to recognize that it is not just the physicality of the pain It's everything. It's either— it changes your whole sense of self. And so to work with a counselor or psychologist, or I was lucky enough to have Sharon, who was a very holistic physiotherapist. In fact, she's just— she's finished her PhD on the gaps for physiotherapists in managing chronic pain, which is brilliant, and I hope that gets a lot of traction. So yes, the gaps are enormous still. We are getting better. They're starting to be discussions. But even in, you know, my professional associations, when I look for— when I— when— if I'm on a platform and I've seen a client and I need to fill some things in into the, the database, pain is not one of the criteria. You know, it's relationships, anxiety, depression, um, financial, etc., etc., etc.

That's interesting. That's interesting.

And I've been advocating for that to change.

Yes, well, that's good. I hope it does. Do you have a— in inverted commas— do you have a toolkit of people that you turn to, um, for managing your pain that you can actually help someone? If someone said, well, who do I go and see? Where do I start?

I wish I had an answer to that. And look, your GP hopefully will be a good gateway, but again, they may or may not have that appreciation and understanding. GP, to find a good physio, maybe a— not holistic therapist, I'm just trying to think of— we mentioned, you mentioned the name before. Osteopath.

Right, right. Alternative medicine or functional medicine.

Functional, thank you.

That's the word.

Functional practitioner, definitely. I would strongly advocate. I hadn't even heard of that when I was going through my stuff in 2013, 2014. It wasn't even something I'd ever heard of. Um, so I think you want someone who's looking at you as a whole. Now, obviously, depending on your particular reason for your pain, you may well have to go to a pain specialist, and you may well have to go and seek specialist advice. But I think you want to be specific advice for whatever your pain is. Yes, 100%. I'm not by any means suggesting we don't seek that medical model, but I think we need more than the medical model. And trying to find someone, you know, again, a counselor, a psychologist who understands either pain or at least challenges to changes in your life and interview them. Don't just go to someone and think— In 2008, I wrote a book which was about, again, there were gaps in support in people understanding what counselling was all about. And I was amazed that people didn't have this understanding. There was a real hierarchical gap between the therapist and the counsellor— sorry, and the client. And again, I think it's— you've got to ask the questions. You're the one that's looking to get the benefit from this. So even though you're likely to be in quite an emotional state and quite difficult to be clear about what you want, you do need to ask the person. Have you ever worked with anyone with chronic pain? Do you know what kind of things would you approach with me? How would we work together? Ask the questions.

You know what, to finish this episode off, I absolutely love that point because that's what people are not doing enough, is asking the questions. When you go to a practitioner I like to say to people, think of it that you're employing them as a job to help you with whatever you're experiencing.

But you have to— yeah. But can I say, you need to write— I need to write it down because you go there and you feel vulnerable. Yes, good ideas. I can say this to you feeling really confident, feeling in my comfortable seat in my home, all well and good. I go there and I'm like, I change, I change. And—

You feel intimidated.

I feel, which is ridiculous, but I feel vulnerable when I go there because I'm desperate. I'm hoping, I'm hoping something will, some magic.

This is the person that's gonna help me.

And so I take in notes always because I can guarantee you if I don't, I walk out there and think, I wish I had. So there is that. But I also want to say that again, in the back of my book, there's a little diagram. And one of the things that has made a big difference for me at the stage I'm at, or was at a few years ago, going through— having gone through that really big flare-up. And again, I emphasize, when you're in that really big flare-up, there's little you can do but be well supported.

Indeed.

The best you possibly can be. But I had to decide not to constantly look outward for answers, but to look inward for answers and, and look for myself. What can I do? What do I need to do to make the changes? Do I need to maybe start Pilates, start yoga? I was told I couldn't do that. I was frustrated. I started a very gentle online one, online, something I found that was like 10 minutes.

Mm-hmm.

Easy. Feeling good that I was doing something. Um, so you— I need you to start not expecting everyone else to give me the answers and fix my pain, but to realize that actually, because I had a better understanding of how pain works— and again, find somebody who can explain to you, or read— there's actually a brilliant book called Explain Pain.

Oh, that looks great.

It's absolutely brilliant. It's done in kind of cartoony form. Um, written by, um, Lorimer Mosley and David Butler, and it's brilliant for understanding pain. So I strongly suggest that people look, read that, because it makes it very clear how pain is processed in our body. And when we understand how it happens, and I always explain this to clients, then you can say, yeah, that makes sense, maybe I can stop that pain message a little earlier and therefore be more capable of moving forward. But I think unless you really understand that— I remember one person said to me, it's a psychologist in a pain program, which is why that pain program I chose not to attend, said, oh, pain is all in your head. Now, If any of us could have got up and clobbered this woman, we would have. But the fact what she actually said is true, but she didn't contextualize it by explaining how we inflict pain. And if she'd contextualized it, it would have been different. So it's very important that you understand somehow, either through your own research, um, or with a support person, with counselor or psychologist, actually how pain manifests itself.

Yes.

And interprets itself in your body, because then you can start to take control of it.

And that's the important part, isn't it?

Yeah.

Taking ownership, taking control so you can do something about it. Because, you know, no one's their best advocate than yourself, and no one knows yourself better than you.

That's exactly right.

That's exactly right. So, Dawn, it's been such a pleasure having you on the show, and it's been so interesting to see and listen to pain from the other perspective. This isn't about what is pain and how to manage. This is the gaps. This is what to do once you have it. You know, I love this. This has been so informative. And do you still see clients You can see clients online. You still— great.

I see clients online. Yes, it took me a long time to get back to that. Um, in fact, prior to me being very unwell, I was only seeing clients face to face. I didn't do any online work. But I, to start back, because I never thought I could work again, I started online. Um, and now, because since COVID online's just become the norm. So that's actually worked very much in my favor. Um, and 9 times out of 10, I can show up. Whereas if it was face to face, that's not always so easy to have that mask on.

Yes.

And look, my client's great. Very often I say, look, I've got to stand and stretch. Clients I've seen for quite a while that I work with, I'm often standing, stretching. We do it together, maybe. Um, so yeah, again, authenticity. It is what it is.

And, um, when I'm only another pain sufferer, I understand. Absolutely perfect. Well, that's great. So if anybody does have chronic pain and you're looking for the psychological help, you're looking for the emotional help, you want to know, you know, how to move forward in your life, to identify the gaps, you know, Dawn has all the answers.

Oh, I don't know about that.

Well, you do live it. You do have from a lived experience. Her book, Living with Chronic Pain: From Okay to Despair and Finding My Way Back, and her pain course for practitioners and anybody who is a pain sufferer. Those links will be in the show notes. Please reach out to Dawn, find out more about your situation, get the book, do the course. Thank you so much, Dawn, for being on the show.

Thank you so much for the opportunity.

Thanks. I would love to know what was the biggest insight or aha moment you got from this interview so you can now speak up, take action, and make informed decisions for your health. And if you like this episode, get instant access to your free ebook, Alternative Wisdom Taking Back Control of Your Health at life-onus.com.