Many of our members would recognise Dr Coralie Wales as the passionate pain advocate that founded Chronic Pain Australia back in 2006, while others may know of her work managing major projects and programs in healthcare that put health consumers and community at the forefront. Yesterday however Dr Wales’s was introduced to Australia as one of the latest Australians recognised in the prestigious Australia Day Honours list for her tireless service to community health.
For those Chronic Pain Australia members who may not be familiar with Dr Coralie Wales and her passionate advocacy for those living with Chronic Pain, we thought we’d take the opportunity to sit down with her, get to know her fascinating story and her vision for a better world for Chronic Pain Warriors.
Dr Coralie Wales, tell us how you came to start Chronic Pain Australia? What’s your story?
The reality is, I didn’t choose to work with people in pain, their reality knocked on my door and I couldn’t ignore it.
Working as a consultant in the personal injury insurance world in the 1990s after graduating with a Masters degree I had many conversations with people (“claimants”) living with chronic pain (e.g whiplash, low back pain were common, but there were a huge variety of painful long term conditions) whose lives had been significantly disrupted.
I learned about the effect of the environment on people’s pain. It was not just the pain itself it was also the healthcare system which offered treatments that didn’t work but made the pain worse. The insurer signalled doubt about whether the pain existed. From the level of family (marriage breakdown, kids didn’t understand why mum or dad couldn’t any longer play with them on a footy field) through to workplace (who didn’t understand why pain continued in the absence of a scannable disease or injury), broad societal attitudes and the healthcare system itself, the stigma attached to chronic pain was a driver that made the pain worse. Losing the ability to make a living didn’t help either. Poverty is hard, as is dependence on “handouts”.
I witnessed these human experiences and tragically sometimes people couldn’t take it anymore, and suicide was a real option for some.
Later that decade I left the industry to start up a new practice specialising in working with people in pain. Understanding the way our human physiology engages with environment in chronically stressful situations, and the link with pain, legitimises the experience. Working with a physiotherapist we practised a new model which had two core features. Firstly, a strong therapeutic and trusting environment created as a result of a strong relationship. Secondly we both taught our clients the neurophysiology of pain and kept reinforcing that knowledge during a pain program which was personal and personalised. More accurately we were teaching the “psycho-neuro-immuno-endocrinology” of pain. In other words, the effect of the stress response being activated over a long period of time on other body systems to produce unrelenting pain. It’s a nasty spiral. We found that approaching therapy in this way transformed many lives. People started to take control. It inspired us to be a part of something so good.
Finishing a twelve-week program often resulted in our clients going back into a world which delegitimised chronic pain. To create a link as someone transitioned back into their larger world I looked for a community organisation that stood up for people in pain – an organisation who understood how it all works and the importance of consumer advocacy. They didn’t exist.
Of course, once you open Pandora’s box, you cannot close the lid. Something had to happen. Over five years Chronic Pain Australia emerged from initial supportive group sessions I ran with clients after programs, to formalising the organisation as a voice for people that live with chronic pain in 2006.
What do you think is the most challenging part of living with chronic pain?
For people living with pain, making sense of it is difficult. Many people have said to me that they wish they had cancer or a broken bone, then others would understand why they have pain. The conundrum is that cancer or broken bone is part of an “acute” or “sub-acute”pain experience. We all understand it as we grow up with it. Kick your toe, experience pain. When it continues in the long term, it becomes a problem as it results in disability. Being unable to do the things you’re used to then impinges on to ones identity. For example, who am I if I can’t do the things that I used to think were important? That leads to depression, and the path to dark places.
There is a growing understanding in the community that chronic pain is not a mystery after all. There are physiological causes of prolonged pain. Getting that knowledge out there in ways that anyone can understand is a challenge. The other challenge is in the delivery. Without intending to, we can trivialise the experience (“I have back pain too, but I am still at work. What’s wrong with you? If I can do it, so can you”) and this can confirm the erosion of identity, and even make people in pain feel angry. That doesn’t help the overall experience of pain.
How would you like to see services and support improved for those living with chronic pain?
I think it’s important that we do a few things, so here are 5 ways we can help build a better future for those living with chronic pain:
- We need to be conscious of negative judgements. CPA is committed to providing a platform for people in pain – a “family” – of people who understand/ live with/ support people in chronic pain, who know about the negative spiral that environmental factors play. CPA has committed to not making negative judgements on people living with pain. CPA accepts people in pain. They are the experts in their own experiences.
- We need to advocate for system change. CPA works with others to raise awareness with decision makers that chronic pain is complex and the timeline to recovery may be years (mindful that it can take years to develop). Current ways of administering health are built on models that work for acute health problems.
- The therapeutic relationship is crucial. Treatments are dependent on the treatment providers who need to reflect on their own unconscious biases. It is common to blame the person in pain for not improving. When I think about this it’s a bit like blaming a child with special needs if they don’t pick up what the educators are teaching.
- Taking a ‘nothing about us without us’ approach. Decision-makers must include the diverse voices of people with pain in any system redesign efforts.
- Healthcare does not exist in a vacuum. We need to link social care with healthcare in co-designing approaches for supporting people in pain to regain function and meaning. This may involve peer-work models where people in pain mentor others. Models in mental health care are starting to emerge which may provide good foundations for approaches that could be built with people in pain. “Partners in recovery” comes to mind. For these to work, healthcare workers need to be reflective about their acceptance of the validity of peer-workers and provide whatever support they can to level the playing field, to welcome peer-workers as the potentially valuable colleagues they can be. Such models could be described as “integrated” because they understand that poverty in itself is hugely disabling, and many people living with pain live with poverty. So we have to think about housing, employment, disability advocacy, education – all of it if we are going to wrap around and bring people living with pain into productive community life. For some it has gone on too long and it will be hard for them. But for others, it’s not.
