Issues Magazine

10,000 Faces of Pain

By Coralie Wales

The campaign initiated by Chronic Pain Australia last year aims to increase understanding and reduce the cost of what has been an “invisible” issue.

My pain and the associated depression/mood swings have been a major contributor to the collapse of two marriages and the estrangement of part of my family. My experience is one of overwhelming misunderstanding and disbelief from almost everybody I interact with. This is due entirely to my pain being invisible to everyone except me. The chronic pain experience is one that will always remain an intensely personal journey. There have been many times where I have gladly given up the desire to continue my journey because the pain was too big a burden to carry. I still have those periods of darkness as I struggle with day to day living. – Pain Is Not Invisible report, Chronic Pain Australia, 2009

What leads to the “overwhelming misunderstanding and disbelief” this man experiences from others about his chronic pain? That question has led to a national campaign by Chronic Pain Australia volunteers to change the way people in pain are perceived in Australian society.

Early in 2012, as a community member and president of Chronic Pain Australia, I visited my local federal member to ask for his support in the House of Representatives to present a petition to highlight chronic pain and its devastating effects on ordinary people. He kindly listened as I spent a few minutes explaining the hard facts about chronic pain.

I told him that in 2010 a national survey of over 2500 Australians, conducted in partnership with Chronic Pain Australia, revealed that one in three lived with chronic pain. This was up from one in five in 1997. Taking the lower estimate, I said, that equates to over 4.5 million Australians, about half of whom report that chronic pain significantly interferes with their ordinary daily activities, including family life and employment. I pointed out that, if you count the number of family members and employers affected by the suffering and disability caused by pain, the number of people impacted by chronic pain in Australia is very significant indeed.

I added that chronic pain is also expensive. In 2007, chronic pain in Australia was estimated to cost around $34 billion per year. I was particularly concerned, though, that this phenomenon also has a huge personal and social cost. People living with chronic pain believe that other people don’t understand their daily battle; the 2010 survey found that 92% feel that others have very little understanding about what it is really like to live with chronic pain and 79% feel that people often doubt the reality of their (often invisible) pain.

Because others don’t believe the reality of chronic pain, people with pain become highly stigmatised. Some people become isolated and, in some cases, consider suicide. Indeed, I said, there are many issues for this group of people, and most of them can be tracked back to broad community lack of understanding of the causes of chronic pain.

After a few minutes listening to this information he stopped me and told me that he didn’t believe that the problem was as bad as I had described. He pointed out that he knew no one who was living with chronic pain, that none of his staff members told him they had chronic pain, and that he didn’t even know what chronic pain was. I replied that for many, because of the fear of not being believed, they didn’t tell other people about their pain.

From that meeting I realised that we needed to encourage people to meet their local federal member to make them aware of the problem. We aimed to develop broad community understanding of chronic pain to enable us, as a society, to reduce the personal, social and financial cost of chronic pain to Australia.

Chronic pain is now understood as a complex multi-body system phenomenon. It is not possible to “see” chronic pain in usual medical tests. Being unable to explain pain through standard medical imaging and investigations isn’t surprising when the real action is taking place at the intersection between the nervous, immune and endocrine systems. Terms such as “neuroplasticity”, “central nervous system sensitisation” and “meta-flammation” are being used in this new and growing field.

It isn’t just people in pain and their families that lack this new understanding. Unfortunately, many health professionals are not exposed to current scientific knowledge about chronic pain, a problem that has a huge impact on many people in pain. Kenny (2004) revealed the difficult relationship between health professionals and people in pain:

I felt that they had written “stupid” on my head … The doctors all look at me as if I am gone in the head … They just write “this lady is a nut case” and pass me onto another colleague.

Most of the doctors don’t really listen to you. Some pretend that they are interested in what you say, but when they just say “uh huh”, I know that they weren’t tuned in… One specialist I went to had an egg timer on his desk. As I walked in the door, he turned the timer over and said, “You have three minutes. Start talking”. I had waited three months for that appointment and had sat for one-and-a-half hours in his waiting room.

Doctors: “People seem to be very hard to educate. They don’t understand. They get fixed ideas about where their pain is coming from. It is hard to change their focus.”

– Kenny, D.T. (2004). Constructions of chronic pain in doctor–patient relationships: Bridging the communication chasm. Patient Education and Counseling, 52(3), 297–305.

Once I realised that my local member was part of the great majority of people in Australia who are unaware of the problem, a plan emerged to encourage people concerned about the problem to get on board. The National Pain Week 2012 team of Chronic Pain Australia decided that their petition, rather than asking for money, would push for debate about how an education campaign might contribute to addressing the knowledge gap.

We had good reason to think that this might be effective. Research shows that understanding current thinking about chronic pain helps people manage it. The results of one 2003 study suggested that professionals and people in pain can understand the neurophysiology of pain, but health professionals tend to underestimate the layperson’s ability to understand such information. This potentially presents a real barrier to being provided meaningful explanations for pain.

However, when good quality information is provided, the threat value of pain is reduced, there is less fear and worry about pain, and physical performance is increased. There is a huge need to strengthen the knowledge base for the whole community, including health professionals as well as people in pain.

In the months leading up to National Pain Week 2012, our petition was publicised on the National Pain Week website ( The campaign was called 10,000 Faces of Pain – a face for every signature required to ensure parliamentary debate in Australia.

The petition outlined the extent of the chronic pain problem, including difficulty accessing treatment and health professionals trained in best-practice pain management. It highlighted the value of public knowledge about pain in reducing both healthcare costs (which have a $5.1 billion impact on work productivity) and unhelpful beliefs about pain.

The petitioners asked that the Senate and the House of Representatives initiate a discussion to raise awareness of the impact of chronic pain on Australians and to investigate the merit of a mass education campaign to:

  • help Australians understand the difference between acute and chronic pain and the need to destigmatise the condition as part of the approach to helping people manage their pain;
  • minimise the risk of pain becoming chronic; and
  • reduce the financial burden of pain on the whole community.

  • Around the nation, many organisations and individuals joined the campaign in 2012. In the months leading up to National Pain Week, we reached out through the Chronic Pain Australia and National Pain Week websites, the Chronic Pain Australia Facebook page and our members and supporters monthly e-bulletin to encourage people to undertake a five-step plan (see box, page 39).

    Initially we thought that asking people to download a paper petition and sign it, gather others interested and send it to us was less likely than asking people to go to a web page where all they had to do was write down their name and address. We were wrong. Over the months before National Pain Week, the envelopes arrived. People had gone on their own campaigns.

    One young woman in chronic pain went along to her local member. This was a Chronic Pain Australia forum entry in June 2012: “I just wanted to let everyone know that as a result of someone going to their Federal local member to talk about chronic pain, National Pain Week and chronic pain in general was raised as an issue in the Federal House of Reps yesterday by the Federal Member for Macquarie (NSW) Louise Markus”.

    This was a breakthrough, teaching us the value of individual action. Ms Markus said in part: “Earlier this month, I met with a resident from the electorate of Macquarie, Andrea Downing, who suffers from chronic pain on a daily basis. As a result of this chronic pain, Ms Downing faces daily challenges. Many like Ms Downing have reduced opportunities for work, having to opt for cheaper accommodation in locations such as the Blue Mountains, where access to health services and suitable transport is limited.”

    National Pain Week 2013 will take place during the week of 22–28 July. If you haven’t already signed up, visit the website ( and support the petition. This is one very important way that you as an individual can make a difference in the lives of many Australians.