One in seven Australians have an understanding of how the hidden illness that is chronic pain impacts their daily life, but for the other six people, it can be hard to get an understanding of what 3.6 million Australians live with. The new SBS documentary Osher Günsberg: A World of Pain acts as a bridge to understand what living with chronic pain actually looks like, no matter the form that it may take within the person who lives with it.
A World of Pain introduces us to Alana Crofts, a 27-year-old living with endometriosis, basketball legend Luc Longley who had to leave the sport after an injury, Paralympian Monique Murphy, who received injuries which saw her lose her right leg and now lives with phantom pain, and Miss Eli Fury, a burlesque artist who uses pain in her performances, and we get to hear Osher’s personal pain journey. Through these different voices, we get to see a clearer and complete picture of what living with pain can look like. And the truth is, as someone who lives with pain, it looks like your everyday person. Somebody in pain may not always outwardly show its impact on their body, but living with chronic pain means that you are always in some level of discomfort.
A World of Pain encourages empathy and understanding, and it does so by introducing us to people who are working to make the lives of those with chronic pain easier, such as Ngangkaṟi healers Debbie Watson and Shaun Nelson, or Professor Mark Hutchinson at the University of Adelaide who is formulating a test to measure pain.
At the core of A World of Pain is the familiar face of Osher Günsberg, the man we know from The Masked Singer or his podcast Better Than Yesterday, a proverbial information sponge who learns from those he talks to and amplifies their pain journey stories in digestible and relatable ways. Through those discussions, Osher learns how pain presents itself in different ways; notably, the intensity of pain may be different depending on what part of the body is being impacted. Endometriosis hurts differently than a broken ankle just as psychological pain leaves a mark in a different, unseen way.
Watching A World of Pain was a surprisingly moving experience for me. As part of my chronic illness, I live with chronic pain in the form of rheumatoid arthritis which fluctuates in pain levels. Some days I’m comfortably sitting down at a three on the pain scale, but more often than not I sit at around a four or five on the pain scale. This equally fluctuates depending on the activities of the day, or it’s even influenced by the level of stress I’m under. On those harder days, I rely on mobility aids like a walking stick which helps with navigating over hard pavement, or an ergonomic keyboard and mouse for work. These are basic items which seemingly cause confusion with people I know; ‘Is everything ok?’ ‘What did you do?’ Responding with ‘it’s just chronic pain’ can be exhausting too, but it can equally start to feel like a routine remark which you can almost hear them say in their mind ‘he’s still in pain? But why doesn’t he just take a Panadol?’
The mental strength it takes to not only get through a day, but to also address the queries about your physical health, is something that’s intimately explored within A World of Pain. The physical toll is equally a mental struggle, with many who live with chronic pain feeling the need to hold themselves up as a benchmark to other, able-bodied folks. It is important to remember that you are not the pain you live with, nor should you hold yourself against the work of others.
The following conversation, recorded over the phone, sees Osher extend his openness about his world of pain and how that has informed the creation of this documentary. He talks about the processes how he manages pain after undergoing surgery, and how that impacted his television work.
Osher Günsberg: A World of Pain is available to watch on SBS On Demand now.
This conversation has been edited for clarity purposes.
I live with chronic pain which comes from chronic illness, so watching A World of Pain was a validating and oddly comforting experience. I want to start off by saying that what you have helped bring to life is important and needed from the perspective of allowing people to understand what pain feels like.
Osher Günsberg: I'm really happy to hear that, man. When we made the first film, A Matter of Life and Death (2021), we wanted to make a film for the people who are in it. We also wanted to make a film for the people who loved people who are in the middle of it. And I think that's what we did with this as well.
The way I look at it, in recent times, since all of the big, shiny TV stuff has taken a break is [asking myself the question] ‘What is it I actually do for a job?’ I think in everything that I do, the core value add, is that I do my best to try to make people feel less alone, whether it be through the podcasting or the books I'm writing or being on stage giving a keynote to a company or making a TV show.
What we really wanted to deal with this in this was to center the feeling that it's not just you, and that it's not just you who's caring for someone who's going through this, but also that you are not alone in trying to fix this or trying to make things better. There are some of the smartest people who will ever draw breath working day and night to try to find you, a perfect stranger to them, a better way of life. I feel we’ve done that and I'm really thrilled about it.
It shows the breadth of the journey of pain and how people experience it on different levels, whether it's psychological pain, physical pain, or chronic illness. I'm curious for you, having experienced your own pain journey, whether getting to see these different aspects of pain was a surprise?
OG: I'm not an amputee. I don't have a womb, so I'll never give birth or have to suffer from endometriosis. Yet, speaking with different people who were going through these journeys, there are absolutely parallels in the way that we are both trying to navigate this path. The commonality was finding a way to redefine our relationship with this sensation and whatever that looks like for you. For me, this is probably the most powerful thing that we can do around it.
It comes down to something I learned when I went through acceptance and commitment therapy[1], the exposure work I did through that [helped me realise that] if I'm in acceptance of it, then I have more power. If I am at the mercy of it, and if I'm denying it, then it's got me and I'm always going to be relying on something else to try to free me from it. But if I'm in acceptance of it, then I can say, ‘This is what my body is, and here are my ways to handle it when it gets bad,’ and ‘Let me remind myself on how often it is actually that bad.’ Is it as permanent as my brain is trying to tell me it is? Then I have far more power. It’s about writing all of this down so I can remember what I need to do so I don’t forget in those moments where I can't draw a breath because I have so much pain.
It's useful to then have those experiences and when you have them enough times you go, ‘Okay, so when there's a flare up, if I do this and this and this, I know that in forty-five minutes or so it’s going to feel better.’ Our brains are wired the way they are, and we are physiologically identical to how we were tens of thousands of years ago, and we are sitting here in 2024 where we are designed to live at the same time [feeling as if] a giant eagle could just sweep out of the sky and steal a three-year-old child and fly away with it. Well, of course our bodies are designed to be terrified, because we are the offspring of the most terrified lineage of people. We are risk adverse by nature. We are wired to respond negatively to pain.
There were certain things that I learned about six months after surgery, [your body will need to adjust how it feels], and this sensation that happens when you move, this is the sensation of what it feels like. To a large extent, you can, if not, make space for what that sensation feels like day to day, but you might even be able to redefine what the sensation means so it has far less power. It's really wild man.
On a personal level there has been this level of vulnerability that has come out of this experience because of your realisation of pain. What is the experience of being vulnerable through a public medium like, whether it be on screen, podcasts, or through interviews like this?
OG: You don't have to do too much mathematics to understand that I'm going through all of this while I'm making TV shows that a lot of people have seen. I'm standing on stage at Masked Singer screaming ‘take it off’ at a giant popcorn machine and then walking off stage where my team has two hot packs in the microwave. I'll sit there in the care that I've got, and I'll do all my down regulations, the breathing exercises I know how to do, muscle relaxation stuff I know how to do. I can have five minutes off set while they change something around and it will give me another 12 to 15 minutes of being able to stand.
I did that. I worked all the way through right up until when I needed that second surgery. That gives you this kind of doorway to be like, ‘What can this kind of pain do to your life?’ Well, if you use a lot of these ways of working through pain, you can keep a lot of what's going on with your life. There's a lot of management, a lot of work, and it wasn't fun, but I was able to do it. I was able to do it.
I wrote about this in one of the columns on Men's Health, vulnerability can only exist if there's resilience. If you have vulnerability without resilience, then you're just fragile. And if you have nothing but resilience and you're so hard, well, guess what? Then you're also fragile. One more hit and one will shatter. You can only have vulnerability if you are resilient and you have to cultivate that. You can cultivate both so you access to them both.
When I was trying to get mentally well again, or I was trying to understand where I was, I didn't know what the steps looked like and I had no idea [how to get out of it]. I know people who have lived with suicidal ideation who know this kind of stuff and are now ok. As far as my brain would tell me, ‘This is a permanent thing, so you better make a big decision because it’s going to be forever.’ It’s like, wait a second, it isn't, let's just work through it. I'm just trying to give what was given to me.
I'm trying to show that there's a story here that you may not realise is there. You're doing your best, but you're stuck in this kind of medieval torture device. There’s a thing called an iron maiden, not the band, but a sarcophagus with spikes that hurts your body and you can’t get out of it. It goes wherever you are. Even on holidays, it's still there. When you get a big flare up, and you're trapped in it, and you can't draw breath, your brain can start to get pretty whispery in your ear. ‘Hey, man, I know a really good idea, I know how to make this stop.’ It’s like, whoa whoa whoa.
But that makes sense at the time.
I wanted to get my leg turned off. I wanted to get a nerve block. I wanted to feel like I don't ever want to feel my right leg again. I wanted to do something so fucking drastic, because I couldn't see a longer timeline. I don't know if it's necessarily vulnerable to be that; if anything, I would think it is strong to be that. I would think it's the strength to say, ‘This is what was happening. This is what I was going through. I think it's important that you know this stuff that I've I discovered at first. Let's learn this new stuff together.’
Because pain is such an internal thing it’s often a hard thing to depict on screen. Near the end of the film, there is this presentation of the colour of pain, which was oddly beautiful. Here is something tangible. What does it mean to be able to show the physical aspect of pain this way?
OG: There's two people in there that are going to be billionaires. Without a doubt. Pain is very difficult to demonstrate and up until I met this man, Professor Mark Hutchinson, I did not know there was a test for pain. He has developed one. He has developed a way that the level of pain that you're experiencing can actually be measured on a muscular level. You're not self-reporting. Many people would be familiar of the scale out of 10. I go through my day between a two and a three every day. That's where my life is, and that's okay. I'm okay with that. I've learned ways to deal with that. Sometimes it’s more, but never less.
Now I can go to my physio, and I can say I'm at a two or a three and that I've got the feeling that the exercises are just not working. I’m two years post-surgery and I’m still in rehab; you can lose hope that these exercises just not working. This is how it's going to be forever. What Mark has developed is the ability to be able to show pain, but it's also about how can you make it smaller? You're not going to be able to have a multi-million-dollar laser in a physiotherapist office. So he's trying to miniaturise it to put it on a desk like a blood sugar test. The idea is that my physiotherapist could run the test and say, ‘When you came in here six weeks ago, you were sitting at 73 out of 100 and today you're 58 out of 100 so whatever we're doing is working. It might feel like it's not, but there's a clear space here that shows you are experiencing less pain today than you were that day six weeks ago.’ That kind of motivating force would be amazing.
Conversely, if you're in a huge amount of pain and you want to take drugs for it, some of the pain that I was feeling cannot be affected by drugs and that's the wild thing. The pain signals that get amplified happen inside the doorway that the drugs can work up to, they're way down the hall from where all the big, heavy hitting things work, so you can take all the opioids you want and be a constipated zombie, not be able to play with the kids or work. I got really lucky, I had this experience at the radiologist. I couldn’t see the nerves that I was convinced had been nicked, but it was fine. It took me about three days to come to the acceptance that this shit was happening in my head. Part of the pain I was experiencing was happening in my head. If you had the ability to show to someone [their pain level, you could say], ‘I'm not going to give you these drugs, because even when you take them, this is how much pain your body actually feels. They don't actually work. All they're doing is [leading to addiction]. We can't have that,’ [it might help.]
I appreciate the work that you’ve done here in clarifying pain journeys for those who may not understand it.
OG: All people want is to be seen. All we want as humans is to connect and we can feel a disconnect if someone can’t actually see us. It's very hard. If you're telling someone, ‘I really wanted to come to your birthday, but I just literally couldn't walk out my front door that day. I needed to lift myself off the ground onto the toilet.’ They might not be able to see it from the outside. People want the feeling that it's not just me. People just want to know that they aren't the only one. You can shout that from a pulpit. This can be used politically. You can shout that as a politician. Sometimes, it can be used to manipulate people in strange ways, as we've seen in the last few weeks.
I didn't make this alone. The people who made this with me are very good. They made Fight for Planet A: Our Climate Challenge and War on Waste. We made Life and Death together. I'm really happy that we managed to make it and I'm thrilled to hear that you had that experience watching it.
[1] Acceptance and commitment therapy (ACT) focuses on helping patients to behave more consistently with their own values and apply mindfulness and acceptance skills to their responses to uncontrollable experiences. Source: RACGP - Acceptance and commitment therapy – pathways for general practitioners