Chronic pain – a health professional’s lived experience

MS Plus acknowledges the traditional owners of the land this podcast has been recorded on, the Wurundjeri people of the Kulin Nation. We pay our respect to their elders, past, present, and emerging.

Jess: Welcome to the MS Plus podcast. My name is Jess and I'm the Health Promotion and Wellbeing Coordinator. Today we're talking about chronic pain, which is really common for people living with MS to experience, and it often involves seeing a range of health professionals and sometimes people may not feel like they're being understood.

It's not often that you have a health professional who also understands the experience of chronic pain themselves, and I'm lucky to be speaking with Anjelo Ratnachandra today. Anjelo is the founder of Beyond Pain and an award-winning physiotherapist who established one of the first private chronic pain and fatigue physiotherapy services in Australia.

His unique set of skills in physiotherapy and counselling has led to him contributing towards numerous research papers in pain and fatigue management. Angela has extensive experience having worked with chronic illnesses for almost two decades, aside from his work at Beyond Pain.

He's also on the Board of Chronic Pain Australia, which is the national voice of Australians living with Pain. The information presented in this podcast episode is general in nature, and you should always consult with your healthcare professional about your specific symptoms and circumstances. This is my chat with Anjelo.

Anjelo, thank you so much for taking the time to speak with me today. As you would know, people with multiple sclerosis often experience high levels of pain and chronic pain, and it's even estimated that around 80% of people with MS will experience pain at some stage in their life and in their MS journey.

And you, yourself, you've got quite an amazing life story. Starting out as a physiotherapist, treating people living with pain, and then along the way, you've also been a person yourself living with pain. Can you tell me a little bit about your journey?

Anjelo: Yes, sure, Jess, and thanks for having me on this podcast too. Look, yes, it's ironic. When I first started as a physio, one of the things that fascinated me was pain, simply because I used to see in private practice that you'll have two people with the same condition come in and, someone might get better and the other person didn't. And, sometimes just talking to them helped and it just didn't, as a physical therapist per se, didn't make sense.

So, I went along that pain journey and the universe sort of connected with me and I had an opportunity to go overseas and then work at an internationally renowned pain clinic in London, which was a really great eye-opening experience of looking at how complex pain is, because it is complex, it encompasses the whole person, and then subsequently, I ended up with chronic pain myself, whilst working in pain management.

And so that, I had a few close calls with fate, but I guess the main one was back on the 23rd of June in 2006. It was a Friday night, and I was watching TV in my London house share in the living room. It was during the 2006 Soccer World Cup in Germany, so I was just watching it on telly and it was about 10 o'clock at night.

Someone broke the window, and they pulled the blind out and then they threw a Molotov cocktail at my head, and so I put my hands up to defend my face and it deflected off my hands and hit the back wall. And it smashed, obviously. And I got showered in petrol and next thing I knew I was set alight.

So, as a kid growing up in Australia, what you're told, stop, drop, and roll, but there was no room in London to stop, drop and roll. So, I actually remember very vividly actually looking at my hands thinking. I'm a physio, but I have to put this fire out on that's all over my arms and my face.

So I actually used my hands to pat the fire out. And then for some reason I had the presence of mine to run upstairs, into the bathtub, and put the cold water and told my housemates, so I was living with three girls at the time and told them, get out of the house, the house is on fire.

Jess: Wow, God, how traumatic for you. And it was a case of mistaken identity, wasn't it? They were actually trying to target someone else's house.

Anjelo: Yes, so it's ironic, isn't it? It was a case of mistaken identity. They were meant to get a house two doors down that had another blue, it was a blue door. Our house had a blue door as well as they just got the wrong house.

But, irony has it that, in a way, I'm glad that they got our house and not the house they intended because the house they intended had a eight year old girl and a mum in the living room. Not even the guy that they wanted to target because he wasn't home at the time, so in a way it was lucky.

Jess: That's so awful. And it's something I guess, living in Australia, we don't often hear about things like that happening, thankfully. But, you know, it's sort of a strange twist of fate to be, you were treating people with chronic pain before it even affected you. But from that incident and living with the pain of that afterwards, how do you think that shapes your practice and your view of treating chronic pain?

Anjelo: Yes, great question. I think, as a clinician, and there's obviously great clinicians out there that don't suffer from chronic pain, that do some great work, right? So I'm not saying you have to have chronic pain to be a great clinician, but I think for me, as a clinician, where you taught stuff about chronic pain and you're trying to practice it's, you believe in it, but you believe in it extra more when you have it yourself and you have to really walk the talk.

And so it really shaped my understanding of pain to a very, very strong level that I'm quite passionate about. And I think it just allowed me to connect with my patients a bit better because I could sort of relate a bit more and they could feel that they could relate to me. Now again, as I said to, there are plenty of great pain physicians that I work with, and pain practitioners that don't have chronic pain, but I think it's just allowed me to connect at a different level. Having to really, really walk the talk and practice what you preach, really.

Jess: Definitely, it'd probably almost create a little bit of like instant trust between the patient you're seeing and them sort of knowing when they talk about their experience and their lived sensations of pain, that on some level that you will understand that because you've experienced it yourself.

Anjelo: Yes, absolutely, it's that concept of lived experience, isn't it? I think, to have that piece is really important and for me, from a pain perspective, it really taught me that, and while I believed it before, it really sort of consolidated the fact that pain is more than just the sensation. It's actually an experience and that's why it's so complex.

You know, when someone has pain, it's not just about their painful knee or their painful hip, you’ve got to look at what their past experience was like with similar pains, you know, what did they see, touch, feel? You know, what does this mean for them now? What does it mean for their future? And it actually is a really complex experience that is pain.

And by definition that's exactly what it is. It's an experience, not a sensation. And we as a society is just learning that.

Jess: Yes, definitely. And it's something that I often hear from speaking with people with MS that have chronic pain and it being such a complex scenario that doesn't just involve one factor or one facet of pain. And it often having really significant impact on mental health and, and fatigue levels, is that something that you see in your practice?

Anjelo: A hundred percent and it's something we preach as well. At Beyond Pain, we certainly talk about that. You are more than just your painful body part. You're a person and we've got to treat you as a person. And it goes in line with one of a quote from Aristotle 2000 years ago that we live by as treaters, and that is treatment of the part should never be attempted without the treatment of the whole. That's the error of our ways, the separation of the body from the soul.

I mean, he summed it up 2000 years ago and we're just learning about it. And you know, pain is complex and no two people will ever feel the same pain. In fact, I could argue you yourself, can't feel the same pain because, once you had that pain, you’ve got to experience of that for the next time. So we can't really take a cookie cutter approach where you’ve really got to, we might have the basic principles and a foundation or a exoskeleton of how we would tackle it, but it really needs to be tailored to the individual.

Jess: Absolutely. And that's even one of the things that, again, I hear when I speak with people living with MS, when they're talking about their pain is it often involves a lot of different health professionals or a lot of different advice and specialists and things like that. So, how do you and your team approach that when treating pain? You know, generally speaking,

Anjelo: Again, we come back to meaning, you know, what does this pain mean for this person? And really looking at separating the pain from their struggle, because sometimes the pain becomes their struggle and then it becomes their identity and then it all consuming them. So, what we try and say is, pain is your condition. The struggle is, what you want to do despite your pain, but you're finding it difficult. Let's try and help you with that, and if you look at it in the context, you know, pain is like having another chronic condition like MS, or diabetes, or asthma. You know, people with MS, diabetes, asthma don't necessarily keep searching for a cure to move on with their life.

They say, right, I've got MS. I've got to manage this. What are the strategies and I've got to move on with my life. And we've got to use the same approach with pain. You know, I think sometimes the search for the cure can be futile and, soul crushing. But, I'm not saying not to give up hope on that, you know, have the goal of looking for this cure, but what are you going to do in the meantime? Let's try and improve your quality of life in the meantime. And so move it, separate the two.

Jess: And I think that's a really, really good point because sometimes you hear about people's goal may be to be living completely pain free and whether that's something that for people living with chronic pain, would you think that that's a goal that's going to be helpful for them?

Anjelo: I think, I don't think we should ever take away from that being their goal. However, I think my question to them would be, I can't guarantee you that I can get you pain free, but if you were pain free, what would you like to be able to do? And then my follow up question was, if you could do that, despite your pain, would you be happy?

And most people say, yes. Because the pain is hindering them from achieving something. So if we can help them achieve their, whatever it is, irrespective of the pain, they're not going to care.

Jess: Absolutely. And do you think a lot of the times, there's sometimes a fear around, what if I do something and it exacerbates my pain, like avoiding things to try and reduce pain, whereas it's really sort of about trying to see what you can do, to help manage the pain.

Anjelo: Yes, that's a really good point. Yes, absolutely, and first and foremost, it's normal to feel like that. It's normal because what we are taught, if it's painful, stop, you know, so, I think historically if it's to do with acute type pain, Okay, fine, in fact, we are wired to be like that. You put your hand in a flame, you withdraw it as soon as it's painful.

But with chronic pain, we know that's not the case. It's often not dangerous, but our brain doesn't know the difference. It feels or perceives pain, it processes pain and it thinks, I'm in danger. And so it tries to protect you, so you try and avoid it, so what we tell our clients is to try and come up with a plan where you're able to do little bits despite the pain for a couple of reasons.

One, it allows a greater health and health in your tissues and your body by doing something despite the pain.

Two, it gives your brain or your mind subconscious confidence to know, oh, I might have the pain, but I can still do it.

And three, it can be a distraction. You know, if you jam your fingers in a door, what do you do? You don't keep it still do you? You shake it, you rub it, you suck on it. You put it, why? Like, why do we do that? Why don't we just rest it? It's because we're giving the brain other information to process, not just pain. So it's important to give that sort of information for that.

Jess: Absolutely. And it really is fascinating, the physical connection and the mental sort of connection, especially with pain.

And, I've spoken with a few people over the years with MS here and they might have been suggested, to maybe see a psychologist and it was sort of interpreted in that moment as you know, the pain's all in my head. So for you, how do you sort of view the input of things like, you know, whether it's mental health support or counselling, psychology, in the treatment of pain?

Anjelo: Look, it's such a critical part and I hope people have moved forward from that stigma that it's in your head. Like I said to you, your emotional state can impact your pain levels as much as what you do physically. It's all interconnected. You know, when I had my burns and things like that, I actively seeked psychological support.

Now, if I, as a 28-year-old or 27-year-old, however old I was, bloke going to a psychologist, the stigma around that, oh, you should be. Well, you know, I had the insights. I was very fortunate because I worked in pain management to say, actually I need this help, I need the tools and strategies to get me through this just like I would go to a physio.

So, tackling pain on its own, just from a physical perspective, does not work. Because sometimes some of the subconscious stuff your body does, you have no control over. That's why it's like an automatic response. You don't choose not to do something; it just happens that way. And then you build a fear to it. So to have some tools to address it, I think it's really critical.

But I think it needs to be in a holistic way and it needs to be meaningful to you. And I think if nothing else, it’s not just about seeing any psychologist or any physio, I think whoever you see, it's really, really important that you feel you're connected with that person and that that person gets you if you. If you don't feel that, it doesn't matter what degrees or qualifications they have, you need to find someone that you feel that gets you.

Jess: Yes. Absolutely. And you know, I think for people who are dealing with chronic pain, it's such a vulnerable sort of symptom. You are dealing with people at their absolute worst and when, maybe treatments aren't fully rectifying the situation for people and, it does become emotional like stress.

We were talking about the other day, the impact of just being stressed on someone's pain levels can really be a factor. I think what you're saying is really, really valid and it's also, sort of coincides, with National Pain Week, approaching in July through Chronic Pain Australia, who you're very heavily involved with.

The theme that they have, which I think would resonate with so many people is, “let them know how strong you are”. And they're sort of using that play on words of, game changer, and changing it to being a pain changer. And it really aims to break down the stigma of talking about, and even seeking care for, chronic pain. And, we sort of know, that many are taught to hide their pain, for fear of appearing weak and maybe, even more so maybe sometimes men, certainly everyone has experienced that, but it's that culture of, “she'll be right” and, “just take it in your stride”, sort of thing.

So, what's your view on, breaking down the stigma?

Anjelo: Yes absolutely, and remember, for most people, pain is invisible, right? And their condition, especially with MS and things like that, there's neuropathic pain that's often, you can't see on a scan. So, and it can be incredibly frustrating to try and explain to someone, because they'll say, “oh, you look okay to me.”

Yes, you do, but you are not. Yes, because pain's on the inside, I can't show it to you. So I think, you know, there's plenty of people, men, women, you know, alike, people alike, who are on the same boat. You're not alone, is the first message. I really love this year's theme with Chronic Pain Australia, because it is about recognising the individual strategies that people use.

“What is your pain changer” is what we ask. So everyone's got their different take on it, and I think it's really important to bring that all together, and I think it's such a great, I'm very grateful to be part of that organisation. I'm volunteering on the board there and we encourage anyone with chronic pain to become a member because it is a national voice.

I don't want to sound like a sales pitch, but I think the more people we can get rallying around to organisations like Chronic Pain Australia, the better. And they really, I think since last year in particular, and this year, are really trying to show some light around chronic pain. And that's with chronic pain with anyone who's got chronic pain and, and pain in general.

And they're so vast and individualized that the more people we can get on board and supporting Chronic Pain Australia, the better. And I know the board is very, very passionate. There's people with lived experience, there are people like myself who've got both, there are pharmacists, the president is Nicolette Ellis. she's an incredible forced to be reckoned with, really passionate about supporting people with pain. So, I think it's a great, great initiative, the Pain Changer initiative. And what's your strong, it's not to say, you know, some people have said, oh, oh, it, it's, I'm sick and tired of telling people I'm trying to be strong.

It's not about that. It's about finding out what makes what's your strong, what makes you strong and helping to overcome. So, yes, it's a great, great initiative. Yeah. Thank you for raising awareness.

Jess: Yes, it really is. And it's such a silent epidemic you know, like with MS being a mostly invisible illness, and pain being an invisible thing, but it really is like a silent epidemic because it's 3.6 million people in Australia are living with chronic pain.

So it is, there is no doubt that there is someone in your life, whether it's a friend, family, neighbour, that is dealing with chronic pain and you may not even know. So it is such a massive issue outside of just people with MS. So, for you, like what's your pain changer moment? Like, how are you sort of living by that?

Anjelo: I think it's my, I mean, for me, I talk about the purpose, passion practice, which is what we do in our business as well at Beyond Pain. We don't have a mission and vision statement just because, for us personally, we feel we deal with people, so we have a sense of purpose, passion, practice, and really, the changer part of it is, as an organisation and me as an individual is, our purpose is to be significant, not just successful.

Really impact someone in a way that makes you, makes them feel significant or makes them feel like you made a significant impact, not just oh you helped them with this, not just a successful thing. So, I think for me it's more around that and, really the passion about, well, what drives you to be the person you want be, you know, whether it's a loving dad or a caring mum, or a great work colleague or a pioneer or voice for MS. What drives you to be that? And then what practices are you going to put in place to allow you to be that, so purpose, passion, practice is really important.

Jess: Yes, that's such a great philosophy, especially, I think I was reading that, with your physiotherapy practice, it was one of the very first, to be so integrated in physiotherapy and pain management, which is such a great thing to have. And hopefully in future there will be more services like that.

Anjelo: Yes. Oh, certainly when I first started it was one of the first sort of solo physio practice. There's definitely more and more practices that actually recognise that. And there's some good, great programs out there, aside from our services, out there. So yes, there are good services out there.

You’ve just got to try and seek them out and find the right one that's going to fit you, but by no means, Beyond Pain or myself as the only, there's plenty of great therapists out there, working in pain.

Jess: And with all of this, sort of in mind and, before we go, what would probably be your one sort of takeaway tip for people living with chronic pain?

Anjelo: Ooh, that's a tough question. I think, have your goals and don't let anyone put a ceiling on them. You know, there are plenty of doctors and therapists there saying, “you'll never get back to this, you'll never get back to that.” Well, they're looking in a crystal ball. That said, I'm not trying to set you up to fail or give you false hope, but if you have a goal, have that goal no matter how big and just work towards it.

Because even if you don't reach it, you're going to reach your maximum anyway. It happened to me, you know, people told me I'll never be able to do high altitude work. I'll never be able to do trekking because of my chronic pain and I had a lung condition, but, it took me five years, but I trained and I got to Everest Base Camp.

Then the following year I did Machu Picchu and Inca trail. Now I know they seem huge, and for some people it might be just, walking to the shower, but it doesn't matter. Whatever your goal is, don't lose sight of that goal, and work towards it, and work with the people. Find the supports that's going to really help you because there are people who will be able to support you and help you and encourage you, and empower you, to be able to do that.

But the goals should be around the things you want to achieve, not necessarily fixing the pain. So, I know it's a bit of a long tip, but that's what I would say.

Jess: No, I think that's great. I think that's, the information and your story that you've shared are just so valuable, and there are so many, great resources out there for people, like Chronic Pain Australia. So thank you so much for sharing that, with our listeners and, and sharing your time.

We really appreciate it.

Anjelo: Thanks, Jess. Thanks for having me.

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