Whether it’s not being able to get out of bed because of debilitating pain or avoiding activities at the risk of causing more harm, living with chronic pain has an array of physical and mental impacts on health.
While one in five Australians and a third of all over-65s live with chronic pain, the results of Chronic Pain Australia’s 2019 National Pain Survey show these people continue to face high levels of stigma and can suffer from the invisibility of their illness.
Seven out of 10 people say they experience stigma or negative attitudes because of their chronic pain and face judgement from family members, medical professionals or people in the public.
“Pain itself causes a lot of stigma because for most people, you can’t see the cause of the pain in somebody,” Jarrod McMaugh, National President of Chronic Pain Australia, tells Starts at 60.
For example, people who previously had shingles can develop ongoing neuropathic pain that lasts for years, but can struggle to find understanding from those around them because the physical symptoms aren’t there.
“They’re like, ‘Well that was years ago, why is it still a problem? I can’t see anything. You don’t have the rash anymore’. That’s one of the major issues with pain,” McMaugh explains.
He also says Australians’ tendency to endure pain without complaint has had a detrimental effect on those living with chronic pain.
“If there’s something that’s bothering you, you seek help for it and if you can’t get help and there’s no help to be had, you just grin and bear it and cope,” McMaugh says of society’s attitude towards pain. “That’s a pretty grim future for people who have chronic pain of any kind.”
Participants of the survey say they experience stigma if their usual doctor is away and they need a script, noting they’re interrogated or made to feel guilty about being in pain. Some say they’ve been belittled by health professionals and made to feel like drug seekers when they discuss medication for their pain.
“The problem with chronic pain is it’s not well defined. It’s not a single condition,” McMaugh says. “Getting the data on those specific issues isn’t simple and straightforward, especially because people don’t necessarily engage with their health providers.”
Read more: Australia’s big problem with chronic pain
Participants of the survey also say they want the public to know that pain isn’t a choice, that it’s not fake, that it’s constant and debilitating, it affects every aspect of life and that it’s chronic. And, in addition to the physical side effects, chronic pain can also lead to negative mental health problems including anxiety and depression.
“You get anxiety about if I do this activity, am I going to get new pain?” McMaugh says. “If I do something today, does that mean tomorrow I’m not going to be able to do anything at all because the pain is going to flare up?”
People living with chronic pain can also become depressed because they’re not able to participate in activities they once loved or because they’re facing stigma for not joining in these activities like they did before.
“The stigma can be very isolating. If you’ve got somebody saying to you: ‘What’s wrong with you? You’re not even in pain. That injury or issue was years ago, why is it still a problem?’, that has an impact on peoples’ mental health,” McMaugh explains.
The survey also shows close to 36 per cent of people with chronic pain speak to their GP about accessing medicinal cannabis and that they want access to it to be simpler and more affordable. Just as there’s a stigma around chronic pain, there’s also a stigma around cannabis use.
“People think, ‘You just want access to it because it’s cannabis-based’, but we don’t say the same thing about people who need to use opioid therapies for their pain,” McMaugh says.
Chronic Pain Australia says access to medicinal cannabis should be subject to the same regulatory and evidentiary standards as all other medications used to treat pain. There’s only one licensed type of medical cannabis currently available in Australia, but it’s not offered under the PBS. Other cannabis products that aren’t registered in Australia can be prescribed, but are subject to conditions put in place by the Therapeutic Goods Association and those prescriptions are only approved on a case-by-case basis.
“You can’t just use an unregistered product in Australia, you have to get permission to do so and that’s a bit of a technicality but it’s still extra paperwork,” McMaugh says. “It’s unusual for someone to have that permission to be rejected.”
At present, evidence says medicinal cannabis may only have modest impacts on pain, which is why many health professionals are reluctant to offer these kinds of treatments.
“It’s going to improve their pain, but it’s not going to change their life and it’s not going to remove the need for other treatments,” McMaugh says.
Participants in the survey say the general public can help those living with chronic pain through education and public awareness, by being more understanding, compassionate and patient, judging less and recognising pain as a disability.
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