National Pain Week puts lived experience front and centre

chronic pain ambassadors

Akii Ngo was born with a life-threatening illness and has experienced chronic pain since the age of 8. She is one of millions of people living with chronic pain – and the stigma associated with it – every day in Australia.

“I’ve been unwell since the moment I was born,” said Ngo, who is now Executive Director of Chronic Pain Australia. “I had my first spinal surgery when I was 16.”

Around 3.2 million people over the age of 45 live with chronic pain, but Ngo is keen to point out that there are many young people who do as well.

“Because that statistic is related to older people, that then leads to the misconception that it’s only experienced by older people,” she said.

“When I was learning to drive, I was abused,” continued Ngo. “People were leaving notes on my car saying that I should be ashamed of myself [because I used the disabled car park]. So there are a lot of misconceptions about what chronic pain looks like.”

The theme of this year’s National Pain Week is “Faces of Pain.” The President of Chronic Pain Australia, Jarrod McMaugh, said the theme was chosen to illustrate how varied different people’s experience of pain is.

“Every single person you look at could be experiencing chronic pain and you wouldn’t know, because pain is a personal experience,” said McMaugh. “So the message this year is not to judge people, because your experience of pain is not the same as another person’s.”

National Pain Week is now in it’s fifth year. McMaugh said it began as a response to the observation that most of the information on chronic pain was put out by health practitioners, and there wasn’t a lot of information out there by people experiencing pain themselves.

The main event this year is a Facebook Live Q&A event being held on 27 July, but many hospitals, allied health professionals and clinics are holding their own information sessions locally.

McMaugh said that, in addition to being an extremely common experience, chronic pain is also misunderstood by the public.

“We’re talking about between one in five or even one in three people who experience persistent pain,” he said. “The reason as to why it’s difficult to get those statistics is because the types of pain that we consider to be chronic come in different forms.”

“For instance, it could be from an injury that has healed, but pain persists. And that adds to the stigma of this condition because health professionals will state that because the injury has healed and that the person should be fine, when they’re not.”

“There is also a lot of underreporting of pain, especially in men. We know that chronic pain occurs at roughly the same rates in men and women. But in our surveys, the respondents are predominantly women. That shows us that men are not as comfortable talking about their experiences.”

McMaugh said that stigma is a big part of the problem.

“Some people associate taking pain medicines with weakness,” he said. “Or there is the perception that people take the medicines to get high – that’s a common attitude we hear from our survey respondents.”

“Another barrier to seeking treatment is access to different treatment options. In [Australia’s] health system, we fund unlimited access to doctors and medicines, but if you need access to allied health –that’s not funded. Or it’s funded perhaps five times a year. If you need ongoing access to allied health services, that adds up very quickly.”

Community pharmacist Kate Gill has been living with chronic pain for 10 years. She agreed that misconceptions and barriers make the experience far more difficult.

“When I first had this pain, all I wanted was a magic bullet to make it all better,” she said. “I had an incorrect diagnosis for about 2 ½ years.”

“I went through multiple investigations. My life really changed when I was referred to a persistent pain management board. That’s when my life slowly started to turn around. Until then, I’d been sinking further and further into a hole.”

“The biggest challenge is the constant comments you get: ‘You look okay, you’re looking good.’ And you might look the same as you’ve always looked, but you don’t feel the same inside. Every day is a struggle. I go out when I’m feeling okay and I look okay – and I do have good days. But if I’m having a really bad day, I hide at home.”

Ngo said that the stigma also extends to the attitudes of some health professionals.

“When you go to the doctor, they may say ‘Well, you look pretty good today, you don’t look like you’re in that much pain,’” she said. “But if you live with chronic pain, that’s your new normal.”

“If you have to live with it, day in, day out, then you just have to get on with it. That’s going to look very different to someone who suddenly experiences acute pain.”

“In situations like that, you have no other choice but to keep going, to be strong and present yourself as doing okay, when in fact you may not be doing okay. You can only cry so much.”

“There are a lot of misconceptions of what it should look like and what your life should look like if you live with it,” said Ngo. “At Chronic Pain Australia, we believe that, whatever your experience is, it’s valid and we will advocate for your voice to be heard.”

National Pain Week runs from 27 July to 3 August.

Photo: Collage of National Pain Week ambassadors/Chronic Pain Australia

Sarah Jacob

Sarah Jacob is a journalist and editor and is currently The Advocate's Deputy Editor. She has written for a range of print and online publications across Australia and internationally with a focus on the environment and human rights. Previously she worked in conservation science and protected area management, and has completed postgraduate degrees in journalism and marine science.