With the upcoming announcement of Pain Revolution 2019 (!) I thought I would share some thoughts and a reflection of my time with such a great event. Most of this post was penned just before and during the ride this year, but when real life came hurtling back post-Revolution, it was lost in the hubbub.
It's been a bit over nine months since I became a quote-unquote "Road Cyclist", and started training for the Pain Revolution 2018. It started with a link on the Noigroup Twitter, and resulted in the purchase of more lycra than I ever thought necessary, four-and-a-half thousand kilometres of training, the most “exquisite” weather and mountains in the ride itself, and an overall unhealthy obsession with Strava. Training for the ride involved about five months of persistent thigh DOMS, and at one point I had lost memory of the last time I got out of a chair quickly, without groaning or staggering through my first few steps.
So when looking at the parallels of the training, the ride and persistent pain, I could simply reflect on the suffering in this. But I'm not going to. Firstly because I believe it would undermine the struggles that people with persistent pain face, in comparing the life I endured with a bit of lactic acid and post-exercise soreness (not to mention the voluntary nature of the whole thing). I feel there are themes that better mirror between the experiences, particularly ones that often ignored or forgotten.
I saw a tweet sometime early in the year that said something like “Men climb on bikes and put on lycra, to feel as vulnerable as women”. While we could examine the social context of this statement, it got me thinking about my vulnerability on the road, and the vulnerability of my patients.
It's scary riding a bike in Australia
Australia is one of the worst countries in the world to be a cyclist. There is an us-versus-them narrative in the mainstream media, pitting cars against motorists. Despite being one of the few countries in the world with a compulsory helmet law (which may have a significant effect on participation rates of cycling), paradoxically we have little else in the way of legislation around cycling safety. My current home state of Victoria does not have a minimum passing distance law, and in the states where the laws exist, it is poorly followed and inconsistently policed. I did a Sunday morning ride in Sydney a few days prior to the big one, and copped more abuse and insult in those 4 hours than the entirety of my training that preceded.
Just my local road in Brunswick has roughly a cyclist’s death from car-dooring about once every two years, and Tour de France winner Cadel Evans has reported even he is extremely uncomfortable riding in Australia, avoiding it when he can. Despite having huge benefits for public health, environmental, and transport issues, riding a pushbike is still somewhat a fringe activity. And some days it is scary.
Frightening in fact. Just being on a bike turns up the threat levels of ordinary things as well. A loud car becomes a deafening nightmare; the slight bit of glass on the road becomes a potentially ride-ending obstacle; and, what seems like a small incline of 4-5%, is (for me) a potential heart attack.
It's scary living with pain
But also, living with pain is very scary. People who experience pain on a daily basis do so in a world that is not at all supportive, and reinforces their vulnerability. Almost all have had their experience invalidated in one way or another by a health professional, friend or family member. Those dealing with compensation systems face a daunting adversarial process and the paradox of trying to get better whilst simultaneously having to prove there is something wrong with them. Those disabled by their pain struggle with Centrelink, and when looking for a little extra assistance in the form of a disability pension, they are undoubtedly perceived by many to be a “welfare cheat” - a simply cruel and unjust term created by spiteful media.
People with pain can have a neuroimmune system so hypervigilant to threat that even stepping out the front door can be a terrifying experience. But with a world like this out there, who can blame them? They live in a frightening world full of terrors, where everything is against them from the mindset of the clinician at street level, through the structures of our health care facilities and hospitals, up to the legislation signed off by parliament. Understanding and managing pain better has so many benefits ranging from the economic through the social, and we can effect this change.
Teamwork builds safety for people in pain
Over the course of the ride I was privileged to see and be part of some fantastic interactions between researchers, clinicians and the public, and watch people leave these more understanding and more hopeful. It wasn't been simply an ‘awareness’ ride, The Pain Revolution has been making a difference to the world we inhabit, and hopefully helping those in pain feel less vulnerable and alone. For that I am honoured to have gone through a little soreness over the last few months.
I would be lying to say I felt 100% safe throughout the entire 760 kms from Sydney to Albury, and there were moments of vulnerability - particularly as it took a few days to get my brakes working perfectly*. But I definitely felt supported, partially from our wonderful guides and a big van with flashing lights, but mostly from our wonderful group of riders, who were both encouraging and challenging. My roommate Simon literally pushed me more than a few of the metres up the hill to Thredbo when I was most struggling, dealing with 100 kilos of body weight and the oh-so thin air of 1500m.
Our patients need the same support and guidance. Certainly an up-to-date health practitioner or two to act as guides, sifting out the traffic, but more-importantly a peloton of friends, family, and co-workers who challenge yet support, and celebrate the wins while recognising the losses. With a great team we can minimise the vulnerability and loneliness pain sufferers face, and help them them recover better.
* Thanks heaps to Bill, the most patient and instructive bike mechanic I have met.
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