To mark Pain Awareness Week 2019, Federal Health Minister Greg Hunt launched Talking About Pain: Language Guidelines for Chronic Pain. We have received a lot of consumer and media interest in the Guidelines, including the often-asked question: Why do we need language guidelines? What makes chronic pain so different that we need to consider the language, the words that we use?
Over the years we have spoken to hundreds of consumers. They share their individual journeys of living with chronic pain, but each time a similar pattern emerges. A pattern of initial disbelief and ignorance. A long journey to get a diagnosis. An even longer journey to seek appropriate pain relief. The stigma they face when their ‘invisible’ pain cannot be encompassed in words. Nearly everyone talks about that time when a friend, a doctor, a colleague or a family member may have casually ignored their pain and trivialised their lived experience. And they talk about the serious and legitimate impact this has had on their own perception of chronic pain.
Chronic pain is a chronic condition, one that 3.24 million Australians live with every day. To put that in perspective, 1.2 million Australians live with diabetes. Diabetes too is an invisible condition, but we do not question a person’s diagnosis of diabetes. We do not ask why they need medication to manage it, why they to visit a physiotherapist, or an OT, or a podiatrist. We support diabetics in our community, we have embraced the public health message and done what we can to support the millions of Australians who are able to study, work, and retain a good quality of life despite living with a long-term chronic condition.
People living with chronic pain still face stigma and isolation every single day. From the workplace that refuses to accommodate the standing desk that a person with low back pain may need, to the family member who remarks “surely it can’t be that bad if you can still walk”, to the doctor who says, "nothing on your scan warrants the amount of pain you are feeling so I'd like you to see a psychologist".
A casual misuse of words or the use of words with negative connotations when talking about chronic pain in everyday conversations can have a profound impact on the person with chronic pain, as well as on their family and friends. It can also influence how others think about chronic pain and increase the likelihood of a person with chronic pain experiencing stigma or discrimination.
This is why the Language Guidelines emphasise appropriate language that is accurate, respectful, inclusive and empowering. It promotes use of language that recognises that chronic pain is not the defining aspect for anyone’s life. It reminds everyone to be mindful of not reinforcing stereotypes or myths about chronic pain.
Talking About Pain was developed through broad consultation with Painaustralia’s members and guided by our consumer networks as well as our Consumer Advisory Group who provided extensive input.
It is one small step towards an Australia that recognises the millions of people that live with chronic pain, stops stigmatising and isolating them and instead embraces and supports them.