Guest Article: A chat with our newest Pain Champion, Tara Moss
Award-winning author, documentary producer, host and advocate, Tara Moss
Why you were keen to get involved with Painaustralia?
I was honoured to be asked by Painaustralia to become a Pain Champion, and after some careful consideration decided to accept this honorary role with the aim of further opening up discussions about chronic pain in Australia. It isn’t an easy topic, for me or for others, and it isn’t discussed enough. I think that has been harmful, as stigma and misunderstandings around pain really do impact the lived experiences of those dealing with pain on a daily basis.
Can you tell us a bit about Tara and Wolfie?
I began Tara and Wolfie as a way to highlight mobility aids, destigmatise their use, and to talk about disability and chronic pain. We know there are a large number of people who might benefit from mobility aids but don’t use them either because of stigma or negative reactions from family, friends and their communities or workplaces.
For many, their health challenges or disability may only be visible to others when using their aid, and so for those with pain conditions – which tend to naturally vary from day to day and moment to moment – using an aid can be something they are shamed for. Few conditions are static, and some estimates say that about 90 per cent of all disabilities are not visible, but as a public we are used to very narrow portrayals of disability and mobility aid use in film or mainstream media – mobility aids that are used by seniors, or those with a static disability like a visible amputation or paralysis. The reality is far more nuanced and varied. Mobility aids aren’t only for those who are elderly. There are thousands of conditions – including pain conditions – that can require the use of one or more mobility aids. Unfortunately, people with invisible conditions, particularly those who are younger, or who look different to the norm, can be abused when using their aids or disability parking permits in public, or may face regular invasive questions about their medical condition. In some cases it is so stressful that people eventually just avoid getting out in public, or stop using the aid they need, and lose independence as a result.
When I began to experience some of these issues myself, I realised I had become afraid to use my walking stick in public and made a conscious choice to be visible and open with it in public and online, stigma be damned.
What do you see as the biggest challenges for people living with pain?
Pain in itself is a massive challenge to deal with on a daily basis – it is embodied, it affects energy, mood, impairment and ability – but on top of that, the fact that it is invisible makes it harder for others to understand and to respond appropriately, whether that be colleagues, family, friends or health professions. Misconceptions about pain abound. I think it is within our power to change that, and improve the lives of people with pain in the process.
If you could impact the lives of people living with pain, what would that look like?
I would prioritise pain-related research to provide more options for future pain management, and better and safer access to pain therapies.
What does being an advocate mean to you and what is the importance of advocacy?
I believe that having a public profile can bring responsibility, and my way of dealing with that has been to advocate for human rights, for kids and for people with disabilities wherever possible over the past 20 years. Advocacy isn’t everything, but it is one part of the solution and can help in real, material ways – improving access, funding and awareness, removing stigma and helping people who are struggling to feel less alone. Words have power, and I try to use them wisely in my writing, speaking and advocacy work.
Being called a ‘Pain Champion’ feels strange in a way, as I don’t feel like a champion at all, much less a champion of pain. Honestly, some days pain kicks my butt. But if I can help to champion discussions around this often taboo topic, I hope it can make a difference.
Pain is hard, but there is no shame in experiencing it, admitting that you do, or asking for help. Pain is a natural part of the human experience, but prolonged, uncontrolled pain shouldn’t have to be, and you shouldn’t have to go through it alone, or in silence. Let’s open up the discussion around pain and work towards better solutions.