Brett, a well-spoken and passionate young man in his early 40s, has lived with chronic pain for around 20 years. A gifted athlete as a child, Brett played a variety of high impact sports, which, unfortunately, combined with a genetic propensity for spinal disc weakness, led to him experiencing his first episode of severe back pain at the age of just 13.
He was able to manage his back pain throughout his teens and did not think too much of it, continuing his love of sports and even going on to study to become a Personal Trainer and Massage Therapist. However, at the age of 24, just before Brett was about to the join the Army, he played a game of social tennis with a friend, and was bedridden for two weeks. This was the first time he realised his condition was actually very serious.
Brett spent several years re-building his strength and fitness, and then reapplied to the Army – this time to be a pilot – at age 27. Unfortunately, that year MRI scans identified significant problems with his spine, and he was unable to fulfil that dream.
Brett underwent two different surgeries over the next few years to try and fix the issues with his spinal discs, however neither were successful. He was forced to give up working as a Personal Trainer and Massage Therapist, and began living on the Disability Support Pension.
With his professional knowledge of physiology, Brett was acutely aware of what was happening to his body, and tried everything he could to stop, or at least slow, the deterioration. He tried opioids, various pain management clinics, in-hospital ketamine infusions, exercise routines, surgery, alternative therapy and everything in between. However, the pain remains a constant in his life.
Brett is currently on medications including opioids and anti-inflammatories, and has created an environment at home that helps his condition, including using a massage chair and following a strict stretching regiment. He has done extensive research into treatments to manage his pain and doesn’t believe there is anything to really help him. He does get results from treatments like physio and tactile therapy, however it is too expensive to have the amount of treatment that would actually be required to help long-term.
Brett manages his life on a day-by-day basis. Some days he feels quite well and can get out and about, but other days he can’t even stand up. He relies on his family a lot for support and help.
“I get a lot of judgement from people, as I still look fit and healthy. When I’m at the shops with my mum and she’s carrying all the shopping… people shoot me some filthy looks.”
“Having an invisible illness like mine can be very isolating. People can’t see my pain, and just assume that there’s nothing wrong with me, or that I’m just lazy.”
“For me one of the major issues is the feeling of despair – a loss of hope for the future. I’ll never be able to work again, I’ll never get better. I’m still young, what does that mean for my future?”
“I wish people had a better understanding of the impact of chronic pain. Many people in the medical profession don’t really understand.”
Brett tells his own story here:
In a small 2 bedroom unit I was renting in Geelong, I lay and stared at the ceiling, contemplating the nature of suicide. All of my dreams and future prospects had been gone for years now. The constant nagging of 24/7 pain was exhausting to both body and mind. The toll was mounting and for the first time I could see the boat had more holes than I had fingers.
For what first began as a spinal disc injury had manifested into something far more monstrous. The constant pain began to cause exhaustion, the exhaustion then led to fatigue. The fatigue then led to insomnia. I had been reduced to sleeping in a chair as laying flat in a bed had become too painful. This in turn created an environment for a bad diet and bad exercise habits.
The medications to combat pain were also having an impact in tandem. Lately I had noticed skin problems and other systemic problems that I'd never had before, start to raise their heads as my immune system and other organs buckled under the strain. My thoughts of dignity, self worth, meaning, purpose, love we're all long gone by now, stomped into the dirt by a merciless disease who takes no prisoners.
And as I lay there staring at that white ceiling I realised I was not only alone but now also somehow separate to society. I no longer fit in with "normal" people in society. I no longer shared their same goals, their same outlook on life because nothing they spoke of in social circles had any meaning in my life anymore. Why speak of a new car if you will never afford one, why go to a pub when the first thing someone will ask of you is "so what do you do?" The contrast to me was stunning. I might well have been alien to this town now. And this town certainly saw me that way too. I'd already experienced the loathing towards people like myself from many places. when searching for a place to rent, a real estate agent had asked me to leave when finding out
that my income was low because "my kind weren't welcome there". A GP had refused to prescribe my usual medication when my normal GP was away because "he could tell by the way I was sitting that I wasn't in pain". A skin specialist had asked me several times in a row if I was an illegal drug user, even though I'd already told him I'd never been one to take drugs. He was persistent... The pain management clinic had told me that if the pain isn't causing further injury, then why am I letting it bother me, as though that pain was now irrelevant and I must be a person of pretty low character to let pain stop me. I had experienced the looks of disgust when people would see me walk from the shopping centre with my mother carrying the load and me at a fit looking 85kg carrying nothing. I had already felt humiliation at the hands of the hospital system too. During a bad experience with a ketamine infusion I could hear several nurses openly laughing about the crazy guy who was flipping out from pain and dysphoria. I had become a dirty little problem that society had no answer for and was doing its best to sweep me under a rug somewhere in the corner out of sight. And it had succeeded.
And as a feeling of total helplessness washed over me in that room, along with it came an emotion which I grasped onto. An emotion of hate. I hated what this condition had done to me, I hated even contemplating suicide and I hated feeling so worthless. But most of all I was sick of feeling depressed all the time. I had never been a person for self loathing and the person now staring at the ceiling had become unrecognisable to me. Everything I had tried to combat this disease had not only failed, but often made it worse as each failure led to lower expectations and lowered self esteem. The surgeries, medications, the GP visits, pain experts, physios, chiros, dry needling, meditations, stretching regimes, massage chairs, mindfulness and the list goes on. All had only served to as vectors to this very moment.
My life had been reduced to such a level of torture that during that moment I would gladly have traded lives with an inmate serving 20 years in isolation......because atleast they have some hope..... The pain had become the least of my problems. Everything that I was inside was now gone. All the physical traits that I had held onto so strongly in the past which were prominent in my personality, now had to be hidden or desolved because they were no longer activities I could indulge in without tremendous repercussions. The person I knew as me inside was truly dead. The outside facade still remained but the interior was gone. I was simply a shell of existence.
In that moment on the bed I'd finally run out of answers. Out of ideas even. So in that moment I did something I've never done before and it saved my life..... I made one up...... In that moment I decided that from this moment on, any time a thought of my future, any time a thought of my true existence, any time a thought of my condition or even a thought of things from my past that I valued about myself came into my conscious mind, I would simply push it aside and refuse to let it occupy any part of my conscious thought. For the alternative was certain death at my own hands.
But let me backtrack for a moment. How does one go from a person with potential, a person who always excelled at things they put their mind to, to this shell of existence?
Well for me it started early. I had been born with a fairly common disease called "scheuermanns disease". A disease which incorporates many names such as kyphosis, disc disorder etc.
for me this disease had created a node on the anterior superior body of my L5 vertebrae. Now to get this straight, many people can have all types of this disease without ever noticing it or it giving them much pain. In fact many health experts now argue over whether they can even be called a true cause of pain. And it's a viewpoint that I do subscribe to even if we don't understand the mechanisms involved. But for me this condition started giving me pain. At age 13 I had already experienced being flat on my back, unable to move for a week or so after a game of football. The frequency and ease with which this happened increased year by year but for those years between 13-25 it was only occasionally a problem to this extent. Without the warning signs of something major going on, I continued to play high impact sports like afl and also spent time racing motocross. Both of which gave some pretty high impacts to my spine over extended periods.
I began weight training at age 13 and by the time I had hit 22 I had begun working as a fitness instructor and massage therapist, spending 8hrs a day bending over a massage table. I had spent a few years now studying anatomy and physiology so clearly recognised the problems my back was facing. Choosing to ignore this, year by year my back worsened until age 24 I decided to follow my childhood dream of joining the military. After passing my exams I was now only days from leaving for induction training, until a few days before leaving, decided to have a game of tennis with a friend. That day my back failed. It failed so badly that I spent the next week flat on my back again unable to move. After realising my back would never make it though basic training, I called the army and pulled the pin on my application.
For the next three years I stayed in the massage industry, constantly studying the human body and soaking up as much knowledge as I could, but the drive to play to my own deep personality traits was relentless. I still wanted to join the military and somehow convinced myself that if I joined as a pilot, the requirements may not be too hard for my back if I could just though basic.
So at age 27 I went back to school to complete year 12 with a high enough study score to gain entry as a pilot. This was a pivotal year for me because this was the year the landslide began. I had been getting sore backs far more regularly and the dull back pain was now a permanent fixture of my days and nights. About 3/4 of the way through the school year, just a few weeks before end of year exams my back collapsed again. This time it was severe. I use the term "collapsed" to emphasise the severe nature of the event and realise that it didn't literally collapse. But this time the collapse had not been influenced by any notable event. It just seemed to come out of nowhere.
So for the first time I was off to see a surgeon for some MRI's. I'd had some X-rays before but never an MRI to properly assess what was going on. As many people who suffer disc related problems will tell you, seeing your own prolapsed disc scan thrown up on the white board for the first time is a pretty shocking moment. If your someone who's life is so physical, it's a kin to a terminal finding.
I was devastated. I was also now in hospital having surgery on that disc and missing my year 12 end of year exams. So no study score for me and no military. Over the next few years I went though a second surgery for another prolapsed disc, this time at the higher L3-L4 level. And although the surgeries did help to remove the intense acute pain related to movement, they made insignificant improvement to the constant pain I experienced 24 hours a day.
After my second surgery about age 30, I began a cycle of trial and failure, where I would engage in activities like pain management or anything else the health system recommended to help my condition. As the failures mounted, my condition declined until I reached the moment in time looking up at my bedroom ceiling.
I'm now 42, my back has started to naturally fuse in my lumbar region and although my day to day pain is now less than it was in my late 20's, the satellite problems caused by years of opioid use (amongst other families of medication), lack of sleep, constant pain, sedentary lifestyle, loss of hope, meaning and purpose etc have all accumulated to make this more of a syndrome now than a back problem. The result of which leaves me with about 1 or 2 days a week where I can function at a basic level. I can expand on this by taking more painkillers and other meds, but not only does this method have diminished returns, but you are essentially borrowing from your future health which means you always have to pay it back. The payment usually requires even worse pain and fatigue in the days or weeks following this procedure. The roller coaster it creates also tends to cause unwanted health problems within itself due to the departure from homeostasis.
I still wake up every day with the conscious thought of doing something today that will benefit my life. Every day i try and whether I succeed that particular day or not, I still wake up the next day and try again. Whether my condition will ever substantially improve or not is still unclear. For me it is now almost irrelevant. This disease has taken so much from me, that even if it does improve, Im now too old to begin a viable career, too old to begin a family, too old to begin life. Never will I experience what it's like to own a house, to raise a child, to go on a family holiday, to meet friends for drinks and feel like "one of them". I'll never again buy my clothes outside of eBay or the op shop. I'll never again go on a date where I feel I have something to bring to the table, something to offer.
It sounds like all doom and gloom I know, and for a large part it truly is. But there are some positives that come from a life lived in pain. The pain and disassembly of your life causes a huge amount of introspection. You certainly don't get through something like this without finding out a great deal about who you are as a person. You are forced to learn many
lessons about human nature which are lessons restricted to the suffering. You see the world for what it is instead of what you'd like it be or what someone else wants it to be. For a lack of a better word the world becomes rather "raw".
So what have I learned during these 20 odd years of suffering that might help you as the reader? Well let me make a list......
1: GO WITH YOUR GUT.
If you get an injury or health problem and the medical system tells you one thing but your gut is telling you another, "get a second opinion".
2: HEALTH EXPERTS ARE NOT THE EXPERTS THEY SEEM.
Here in the west we regard health experts as gods or robots of infinite knowledge. From my experience they are largely fumbling around in the dark like idiots. This would be fine if they were truthful about it, they are after all just human. But don't let them hear you say that. They like the facade, even if it means hurting the patient.
3: OPIOIDS WILL EVENTUALLY KILL YOU
The data is now enormous to how bad opioids are to your long term health so avoid them as much as you possibly can.
4: THERE ARE NO CURRENT ALTERNATIVES TO OPIOIDS.
The medical system will do everything it can to get you off opioids, but often this leaves you with a worse scenario than before. Yes they are bad, yes they are slowly killing you, but without an alternative they are all we have which make a substantial difference to pain.
5: MINDFULLNESS IS A SCAM.
Yes sure almost all parts of mindfulness have a positive impact.....it's the amount of impact they are inflating. There's no use spending an entire day working on mindfulness techniques if they give you a 2% reduction of pain.
6:PEOPLE SUFFERING CHRONIC PAIN ARE NOT LAZY.
Think about this, who in their right mind would want to sit around in pain all day if it meant they could be lazy. Sufferers appear lazy because they are exhausted. Exhausted in both body and mind.
7: THE WORLD DOESNT CARE THAT YOU SUFFER.
Our welfare for people on disability whom from no fault of their own can no longer function, is less than it pays to be a criminal. You WILL live below the poverty line and it will have a huge impact on your ability to recover.
8:PUT GREAT EFFORT INTO FINDING A GP WHO "gets it"
It took me a good 15 years to finally find an awesome GP. This would have made a massive difference to my current health had I found this GP towards the beginning. It may have even changed my path completely. So go though 50 GPs if you have to, but find one that's a good fit for you.
9: DONT PUNISH YOURSELF FOR FAILING.
Living with chronic pain, you will fail, you will miss deadlines, you will let down friends, so many things that will get you down over time. Try not to punish yourself too much as failure with chronic pain is a regular event.
10: DONT SAY YOU UNDERSTAND WHAT ITS LIKE Just because you had a bad back for a week once, doesn't mean you know what it's like to have a chronic back pain. The reality is that once you suffer debilitating pain for decades, the pain is the least of your worries. The loss of hope, meaning, purpose and self are much more impacting.
11: PEOPLE WITH BAD BACKS CAN STILL LIFT THINGS.
I often hear people say, "your back can't be too bad if you can lift that" They often hint that you must be a fraud. Bad backs take many forms and the pain is experienced in unusual ways. For example if I remain static I can occasionally lift heavy items for brief periods..... Sweeping the floor for 5 minutes however could very well put me down for a week. Go figure.....That's just how backs roll, they are dynamic and not easy to predict.
12: FIND YOURSELF A HUMBLE EXPERT
This was huge for me, a few years back I met the neuroscientist Lorimer Moseley, from the university of South Australia. Not only does he understand the pain process more deeply than anyone I know, but his humbleness and
generosity have had a massive impact on my life. So find a health professional or a person who's character you value highly to bounce thoughts off. His input in my life has been far more reaching than any health program I've yet tried.
If your a person reading this who has never experienced chronic pain before I would suggest you imagine this.
Imagine how you felt during your last acute injury or say your last bad headache. Picture how that made you withdraw from the moment and life in general.
Now imagine your worst hangover after a really big night out.
Now imagine the two of those things together, Now imagine you have also just lost your job.
Now imagine they last for ten years.
Now imagine how poor you have become from no income.
Now mix that with the constant hangover and pain.
Now your living as a sufferer of chronic pain.
Thanks for reading and let me just leave you with this.....
Living a life in constant pain is crippling Living a life in a crippled body is degrading But living a life degraded is devastating!