#6 The True Cost of Chronic Pain
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Welcome to episode #6 of beating chronic pain - the podcast that helps you get unstuck from chronic pain and back to living your life again with ease and comfort.
I’m your host Tom Wilson and I’m thrilled you decided to join me today. Today we’re going to take a look at an uncomfortable, yet important topic when it comes to chronic pain. That little tag-line I just shared about helping you get unstuck from chronic pain and back to living life with ease and comfort is my goal. And one of the things I’ve come to see is useful to achieve that goal is to help people to get in touch with the TRUE cost of what happens in their lives when they have chronic pain.
The TRUE cost is not always present. We’re not always aware of all the little or large losses that we accumulate in our lives over time. Particularly if chronic pain has been with us for a long time. I also think most people are not that aware of all the impacts that it has on family and friends either.
Chronic pain is hard. There’s no way around it. And people find so many different ways to deal with that. Some people dull their feelings with medication. Other people go into deep depression. Other people try to keep positive and look on the bright side of life.
These are all ways that we tolerate because we can’t see a way out. They might be effective ways of coping. But they don’t help us to create any kind of change.
In this episode I am going to invite you to temporarily put down any kind of filter that helps you see life on the bright side. I want to offer a peek into some of the truth about what chronic pain really delivers.
My desire is that being in direct contact with the truth of what chronic pain is like will add a little fuel to the motivational fires to take some important actions and make some decisive changes. Because even if your experience so far has been that you can’t seem to get rid of the pain, I am here to share that it IS possible. But it is important to feel the full impacts of the pain, otherwise it can be easy to just keep coasting along with a less than ideal situation.
It’s the same as when you accidentally touch a hot oven. You immediately pull your hand away to keep it safe. This is acute pain and it’s some of the most powerful motivational fuel I know of. My hope is that by reminding you of some of these truths, it will make the pain more acute and add some motivation to fuel some change.
There is a whole spectrum of different experiences when it comes to chronic pain. It can range at the top end from extraordinarily debilitating pain that completely takes over someones life right down to pain that is mild or occasional. People with this more mild pain might not even think of themselves as someone who suffers from chronic pain. However, no matter where you are on the spectrum, there is a cost. There is a real tangible cost.
I had a client come to me last year. An elderly gentleman who had been dealing with chronic pain. He suffered from pain in many different joints throughout his body. As he was telling me about what his life was like he described it as though his life was continually shrinking. For him, his world was getting smaller and smaller day by day. There was a whole series of cascading events that flowed on from him being in pain that was making the situation ever worse. This was a terrible situation and he was consciously aware that it was happening.
This concept of a shrinking world is a common feeling that people in chronic pain have.
I remember when I was in chronic pain that it was an extraordinarily difficult journey. It wasn’t so much the physical sensations of pain that were the problem. That was something that I could deal with. It was more the emotional and social side of things that became difficult.
I had so many feelings of despair and depression because I was unable to participate in life in the same way that I used to. Pain is extremely isolating and this is a punishing part of the chronic pain journey.
Back when I was in university I used to park outside of the CBD because parking was so expensive for me back when I was a student. I used to walk to the city centre where the university campus was from the outer suburbs where I would park each morning. So on a typical day I would have a 25 minute walk to get into the city and it would be up some quite steep terrain. Auckland city has many different volcanoes dotted around so there’s a lot of steep hills to go up and down. This was a great way for me to start my day. I would be getting some really good exercise, some fresh air and often I would meet a friend on the way and walk in with him. Looking back I have really fond memories of making that morning journey. It was a really refreshing and enlivening way to get started each day.
Once I was struck down by chronic pain that whole situation had to change. I was suddenly unable to make that journey anymore. In the early stages it was difficult for me to walk 5 or 10 metres let alone a few kilometers up steep hills and trying to keep up with the pace of my friend who was fit and healthy. I didn’t immediately realise how much of a loss something simple like this was, but this is just one small example of the type of thing that begins to disappear from a persons life when they’re in pain. In this example I was losing exercise, fresh-air, morning conversation and human connection. I was losing the freshness and vitality of arriving at university having made that journey already at that early hour of the morning. I think that over time experiences like this begin to cascade and add up. As I said before, pain is isolating and the fact that now I was unable to spend time with my friend in the morning was a small step closer to being disconnected from the people in my life. When you begin to add up the different experiences like these you can see how relatively quickly I was feeling quite alone.
I hear the same story like this from people all the time. The worse the pain is, the more social isolation there is. Now I don’t believe this is something that people intentionally do. It’s not like people are kicking you out of their lives because you are in pain. I think it’s just a natural consequence of being less than able to operate as usual.
I remember that some of my in-laws invited me out to go to a rugby match when I was in pain. It was a game between the all-blacks and Argentina and it was in Auckland city. I was really grateful that they invited me out because by that stage I had been pretty isolated from doing much of anything that most normal people are doing in life. I was feeling really quite sad about my whole situation. I don’t think I was quite conscious of how badly it was affecting me at the time, but now when I look back I can still feel the despair and horror that my life had so suddenly been taken away from me and I was experiencing a lot of grief about that. So anyway, I was determined to go out to this match to feel a bit more like a normal person again who has things to do and people to hang out with.
My mother-in-law kindly went out of her way to the hospital and hired me some crutches that I could use especially so that I would be able to move around and get to the stadium. Up until that point I had been stubbornly refusing to do anything like that because on some level I believed that it was a sign of me giving up. I thought that if I let the pain win and cripple me and have to depend on gadgets just to get around that it would mean the pain had won. I couldn’t bare letting myself believe that the pain might be there for good. I didn’t want to be defined by it.
So the big day of the rugby match arrived and we all set off on a journey. We drove to the train-station and we all hopped on the train. I was loving the new crutches and they were making it so much easier for me to get around. I still could barely put my foot on the ground because it would cause me excruciating pain, but if I was careful I was able to get around mostly without problems. I remember when I was getting on the train there was this sense that people were looking at me as though I was different. I certainly felt different and I felt as though everyone else was okay and that I was somehow defective. Now, whether other people were thinking that or not is irrelevant really. What is important is how I was perceiving the whole situation. This stuff was triggering all of my wounds and negative core beliefs about not belonging and not fitting it. I was feeling so different and so unlike the rest of the people. It made me feel ashamed and even though everyone else was trying to include me as much as they could it was really hard to do so when I was already feeling so different.
When we hopped off the train it was then a long walk to get to the stadium, in through the gates and then up to our seats near the top. It was a tiring experience for me trying to balance and hold my weight on the crutches instead of my legs. Also being amongst bustling crowds with people who either were bumping into me and knocking me off balance or avoiding me because they wanted to be aware of helping me. But this avoiding me, obviously just pointed out again that I was different and unlike them.
Once we were up there, some of my in-laws wanted drinks and again it was another experience of being different than them. They had to wait on me as though I was unable to do things for myself. This was okay and I was able to accept help, but it just kept on highlighting all of the differences that chronic pain creates. If you cannot function in a normal way, then other people have to take up the slack.
Once the game was over, it was the whole experience again of getting back down the stairs, through the crowds, to the trainstation, back to our car and then driving back home. The experience was exhausting and the next day after going to the match, my foot was really sore. I paid for the experience with more pain and it took a few days to get back to normal again.
Now while I was grateful for being able to join my in-laws for this game it was a real struggle for me on many different levels. I felt socially distant and unable to be really connected with them. I felt like a burden and as though I was an outcast. I paid for it physically with more pain. It was physically and emotionally exhausting. I had to mentally prepare for a few days before going to it, not to mention the logistics of having crutches.
All of this was such a stark contrast to my regular life pre-chroinc pain. Going to a rugby match would’ve been no problem at all. I wouldve had a lot of fun and it would have strengthened my relationships with the people around me.
I don’t have any memories of going to any more significant events with bunches of people over this time while I was incapacitated. The reason was probably some combination of people considering that I couldn’t do what they wanted to do, but also me not wanting to be a burden.
I also understand this from the other perspective too. I went out sailing with a bunch of my male friends the other day. One of those men is struggling with some chronic pain at the moment and I got to see what it was like for him being involved with this sailing trip but without being able to participate fully. My heart went out to him as I watched his experience. I have spoken to him about this previously so I know that it is a struggle for him, but he did a great job to take it in his stride. I saw how whenever there was something to do on the yacht that he was mostly unable to help. We had a funny experience with nearly losing our outboard motor for the dinghy overboard and it was all hands on deck to get it sorted out, except he was unable to help us much.
Given that the vibe of the trip was very much men-on-an-adventure and we’re all getting involved and being useful in making sure the boat was running properly. There’s a real sense of being purposeless in that situation.
I know that sometimes when I am thinking about activities I want to do in my life that I consider inviting this friend, but then there’s the part that kicks in and reminds me that he can’t do what I want to do. If I want to go out hunting in the bush for 12 hours then there’s no possible way he can join me. It’s just not going to work for him. So while I don’t have the intention of excluding him, I also cannot continue to do the things I love while inviting him along for the ride. I expect this was probably the same for the people in my life when I was in chronic pain. They weren’t intentionally trying to exclude me from things, but it just adds a huge amount of effort in terms of logistics for me to be involved so it’s easier to just carry on without me.
This my friends, has serious SERIOUS impacts. I hear this from people all the time. People get marginalised because they’re unable to function like people without pain.
The other thing I hear is that people feel really misunderstood. When you try to explain to your family and loved ones how you’re feeling that can be difficult for them to understand. They may not be able to really listen and get what’s going on for you. And even if they are able to listen compassionately then over time if it’s the same old story then it gets difficult for them to hear it over and over again. Some people can take this as complaining and they want to switch off or avoid.
This is another aspect where people begin to self - isolate. If every time you speak to people about your pain and other people cannot understand you then pretty quickly you learn that it’s just easier to keep it to yourself and just get on with life. This leads to those feelings I was describing before that almost feel like you’re having a separate and secret life that others cannot understand. It feels like being an outsider.
It’s just like that man said, your world begins to shrink. Day-by-day, things begin to get harder. Everything contracts and it keeps going that way.
Another impact of chronic pain is that people are no longer able to engage in the things in their lives that bring them joy. Whether it’s horse riding, cycling, dancing, surfing or even just walking in the park. These activities are either eliminated or diminished in some way.
I used to practice a martial art called Kempo. I had practiced up to black-belt level and it was one of the most enlivening things in my life. I had SO much fun practicing kempo. One of the best parts about it was the sparring. This is the part where it gets real. You fight other people and you get to apply all the skills you have learned to beat them. I have had some of my peak experiences in life whilst sparring. Experiences of deep flow where time seems to slow down, everything comes alive and there is this sense of never-ending blissful eternity in a single moment. To be honest, even though sparring sounds like it could be a rough thing and related to violence, it is exactly the opposite for me. I can’t remember the number of times I have been in hysterical laughter whilst fighting someone else. It’s really really fun and it’s deeply nourishing for my life. Aside from this, there was also the regular training which helped me to build strength, dexterity, coordination, power, discipline, leaderships skills, self-defense skills, confidence and so much more.
So when you start to see this picture of what a simple activity has in my life you can understand how much of a loss it is when it’s no longer there. Overnight I went from being someone who was deeply involved and enthusiastic about my physical practice to someone who could no longer participate.
And then you add in the layer of relationships it shows some more of the true damage of chronic pain. Some of my best friends were at Kempo. My father practiced kempo and it was a big way in which we bonded with each other. These relationships were no longer fed in the same way that they were before being in chronic pain.
The world continues to shrink. Smaller and smaller day by day.
Sleep is another factor that is tied into this knotted ball of twine that is chronic pain. When I had my sore foot and knee it was hard for me to get comfortable in bed. The weight of the blankets on my foot were painful and sometimes my partner who I was sleeping next to would kick or knock my foot or knee accidentally and without warning. I was usually able to get to sleep okay, but sometimes I would be woken up in the night because I had moved badly and it tweaked the pain enough to wake me up. I don’t think my case was particularly bad when it came to sleep. I was still usually able to get most of 8 hours a night. However, for many people with chronic pain this is not the case. Sleep deprivation is a serious issue for people with pain. Some other people struggle with terrible back pain, neck or hip pain which makes it extremely difficult to get comfortable in bed and if they need to change position it can provide sharp spikes of pain that make it difficult to get back to sleep. If you listened to my first episode on chronic pain you’ll know that pain is a holistic thing that’s generated by your brain. Sleep is one of the things that influences it. So if you’ve had a bad sleep then you’re actually going to feel more pain the next day. This is not a good situation. You can see how this can quickly setup a cycle of pain that feeds poor sleep that feeds more pain that feeds even poorer sleep. And it’s not only the additional pain that is a problem. It’s the fact that people become fatigued. They lose interest in doing things in thier lives if they’re chronically underrested and they become less likely to engage with people socially in their lives.
This picture I’m painting is complex and intertwined. There are so many factors that are involved and they all have the potential to create feedback loops which reinforce and magnify the problems. Perhaps if you’ve been in chronic pain for a while you can see some of the ways that chronic pain spreads like an infection through life and begins to shut it down.
It makes sense why the world gets smaller and smaller and smaller.
Now I know that people who have chronic pain are not useless. They are often people who have led very active and involved lives prior to being in pain. They are not purely victims who are just complaining about a situation and not willing to do anything about it. Many people with chronic pain have got out there and sought help for their difficulties. They have been to doctors. They’ve done their own research. They’ve tried alternative therapies and practitioners. But still their pain persists. Their worlds get smaller and smaller all the time. And there’s very few people who truly understand how this all works and what to do about it.
I lost count of the number of practitioners I went to see to help me with my leg. Most things did nothing to help at all. Some things had a small influence or a temporary influence.
It was extremely disheartening to have that experience and not have anyone to turn to for guidance.
And as I mentioned earlier, chronic pain exists on a spectrum. My experience was probably somewhere near the more debilitating end of the spectrum. But there are many many people who have low level chronic pain in their lives which they tolerate for the same reasons as I’m describing. There doesn’t seem to be anyone out there who can offer any kind of guidance that is helpful and useful.
These low levels might not have quite the same impact as the more debilitating pain, but it still does have effects. And it still has the effect of shrinking peoples lives. Even someone with low-grade back pain feels that every day. They might avoid doing certain activities with their friends. They anticipate that some things are just not worth doing anymore because they might pay for it later. They cannot walk and run and go fishing, hiking or rock climbing in quite the same way as they could before because it’s all tainted with pain. These things all continually shrink and shrink a persons life and they all contribute to making the pain worse over time. These feedback cycles of pain get setup and gradually, year by year, without really noticing it, people suddenly find that whoa, they’re in a lot more pain than they used to be. They are no longer participating with life in the way they used to when they were younger. They also find that they’re a lot more fragile. Things they used to do with ease now become possibilities for injury. Less active people are more susceptible to being injured and their strength and vitality fades away.
Whew! So that’s a lot right… There are obviously many many more ways that pain affects peoples lives. People lose their jobs, their livelihoods, their relationships. Chronic pain is strongly associated with depression and anxiety. Suicide is an extremely big issue for people in chronic pain. People lose their financial independence, they end up with surgeries which may or may not solve the problem and can often create other problems downstream. They also have constant aches and fatigue that seems to come from no-where. They get pain from compensatory movement patterns. Downstream effects that are just as bad if not worse than the original pain.
As I said at the beginning of this episode my invitation is to put down any kind of filter that makes you see life on the bright side. I want to help reveal the truth of a situation. So, in this moment, I would love to also invite you to just stop and be with everything I’ve shared so far. Let it all in and let it touch you. I’ll pause for a moment to give you time.
Thankyou for feeling that.
There was a word I used at the beginning of this episode. That word was tolerate. What does it mean to tolerate? Well, when I look up the dictionary definition it says “to allow the existence, occurrence, or practice of (something that one dislikes or disagrees with) without interference.”
When I talk to people in pain there is an extraordinarily high number of them who fit this definition with their pain. They are tolerating their pain. They are tolerating the pain even though it is having all these horrific effects in their lives. They are allowing the existence of their pain - which is something they dislike - without interfering with it. They are essentially doing nothing about it.
In my case, my transition from being pain-free into full-on 10 out of 10 pain levels was abrupt. It happened overnight and so the stark contrast in my freedom in life was very clear. In many other cases, the changes are gradual. They happen over time and they tend to creep slowly into people’s lives. What I’m describing is the whole metaphor about boiling a frog right. Do you know that one? I don’t know how true it is because I would never want to boil a live frog, but the story goes that if you throw a frog into hot water then it will immediately jump out and be okay. But if you pop a frog into a pot of cold water and then slowly heat it up the frog never realises until it’s too late that it’s been boiled to death! So this is exactly what happens in a lot of cases. People start off with a small injury… it leaves them with a little twinge… they think it will just heal over time… but then it doesn’t. It stays put. Perhaps they seek some help, but it doesn’t really resolve properly. Then time passes and suddenly their back starts to hurt. They’ll occasionally get these episodes where their back goes out and they are in serious pain for a few days before it comes right again. On and on it goes like this where the movement habits are never really examined. People might seek help occasionally, but it never really gets to the core of what’s going on. The pain becomes more and more normal. More and more accepted. More and more tolerated. This is the type of pain that over time is debilitating. This is the type of pain that potentially can take away a lot from your quality of life.
Now I’m not saying there’s anything that anyone has done wrong here. I think in many cases people are willing to seek help. But they don’t lock onto the right people who are able to empower them with tools to help them understand their own bodies. Instead they visit people who might help to re-align bones, or soften out the muscles… but those things are just temporary. They make barely any difference when it comes to dealing with a pattern that has been there long term. If your habits of movement are still the same. If you still have just the same limited awareness of your body after you go to a session as you did before you went in there then it means that nothing has changed. You haven’t learned anything new and therefore nothing is going to change permanently.
Often times people have seen so many different practitioners or doctors about their pain and no-body makes much of a difference. So they start to lose hope. They stop believing that anything can be done about it. They think that it’s just a consequence of getting old. Or it’s a tweak that happened years ago and therefore there’s nothing that can be done about it anymore.
It makes sense that people lose hope in this situation. I remember seeing a lot of practitioners and it was so disappointing when I realised that nothing had changed. Even when something did improve it was such a relief… but the fact that it would just start to come back again over time meant that I was locked into a relationship of having to see this person over and over again just to be able to function. I hated the fact that I relied on someone else just to be able to do stuff that other people completely took for granted like walking.
I used to go to see this physiotherapist and he was recommended to me from a lot of people I knew. It was a big 45 minute drive across the city for me when I went to see him. He would stick acupuncture needles in various parts of my body. Often into my groin and I would feel an immediate sense of relief. My walking would get easier and I would feel amazing. But after a week, the pain would start to return and I would have to go and see the guy again just to keep myself walking.
So this is part of my reason for bringing these impacts up. If you are someone who has tolerated pain because you don’t know what to do about it, then this is just a check-in with yourself. How are you doing on all these fronts? What impacts are happening in your social life? Are there activities that you used to be able to do and you can’t do them anymore? What effect is being in pain having on your financial life? Your love life? Are there things that you wish you could do but you just can’t anymore.
Are you a frog who is slowly being boiled alive? If that is the case, are you okay with that? How long are you going to keep putting off doing something about it?
I don’t mean to belittle you and call you a frog. But I am just calling out something that I see a lot of. And it breaks my heart because I know that there is a way out of chronic pain. People don’t have to tolerate it. They don’t have to just get by without doing anything about it. I know it’s hard if you’ve been let down by lots of different people. But the cost of giving up is high. If you do nothing now, then what is your life going to be like in 10 years time? What about 20 years? Will you still be able to function? Will you have to slowly let more and more things go because you’re unable to do them easily anymore?
While I was going through my professional training in the feldenkrais method my grandfather was going through a process of degradation. I watched him gradually over a period of several years lose his ability to walk. He used to be a potter, painter, sculptor and all round incredibly active and involved man. He had so many passions in life and was curious about everything. It was so sad to see the way in which over time he had to give up his pottery studio. He had to stop going out into the orchards and making jams. He had to stop woodwork, growing plants and all the rest. Eventually he was in a walking frame. He could only hobble his way around the house because his hip was so sore.
I did a session with my grandfather one day. I was still in the very early stages of developing my expertise in movement re-education. But I wanted really badly to be able to help him. So I got him on the table and I showed him some things about his pelvis. I showed him some movements that helped him to sense clearly the potential of movement in his pelvis. The movement was very stiff and limited and clearly asymmetrical. So I wasn’t expecting much. But when he stood up at the end of the session he was able to walk to the bathroom without the use of his walker anymore. It was incredible. He looked like a completely different man. A much younger version of himself. He was so shocked. He hadn’t been walking properly for months and months prior to that but then over the course of 45 mins he was able to regain a huge amount of lost ability.
Now, he didn’t practice the thing I showed him and so gradually over time his old stuck pattern re-emerged. But it was very clear that it wasn’t his age that was causing him to be in pain. It was the fact that he was missing sensory information and his brain was unable to show his legs how to function efficiently. Once we provided some of that missing information, his coordination came back and he was able to walk again without pain.
My grandfather did not have any inkling that it was possible to walk again without pain. He thought it was just a normal part of the ageing process and he had a story about how it had all started when he was running in his younger years. The way he saw it, the pain that he experienced sometimes while running was the cause of his inability to walk properly in his older age.
The message I really want to give in this episode is that there is a way out. There is a way you can start to undo some of the pain-inducing habits of movement that you have. It doesn’t matter how far along the spectrum you are there is a way to get out of chronic pain. Even if you’re in your 80’s and you’ve had a lifetime of living in this contracted way, there is still a way to improve.
My goal for my own life is to continually improve. I want to be moving better when I’m in my 80’s than I do right now. So far, this is becoming true. I am in my mid thirties now and I am moving more efficiently than I was when I was in my 20’s. My path is going in the right direction and it’s because I am continually involved with neurological movement education. I keep updating my movement maps and I keep learning more about my body. This is the way out. And beyond that, once the pain is gone, this is the way into greater potential.
Do you even know what you’re capable of in your life? Do you know what type of skill is available to you as a human with a nervous system that is built for learning? I don’t think any of us really know our potential… but there’s only one way to find it.
And if you are in the early stages of chronic pain. My wish here is that this is a prompt to get you to recognize some of the impacts that it might already be having and also to alert you to the fact that pain sets up those feedback loops in peoples lives that continually shrink people’s lives. People’s lives get smaller and smaller day-by-day. Bit by bit, they lose function, independence, relationships, meaning and their zest for life.
The question is, are you going to tolerate that or are you going to do something about that? It’s up to you.