Chronic Pain Sufferers Face Stigma From Medical, Wider Community
Negative attitudes are often directed towards women 'who can't handle certain levels of pain.'
Hayley Jamieson’s body tells her she is in pain when there’s nothing physically wrong with her limbs. But she feels it every day.
“It’s like having a hot piece of metal on parts of your body,” the 25-year-old artist told ten daily.
“It is an achy feeling. You start to shake, you lose a lot of strength.”
Jamieson is managing what is called fibromyalgia, an “invisible” yet potentially disabling neurological condition that mainly affects young to middle-aged women.
It’s one form of chronic pain that continues to hold stigma, both in the medical and wider community. Advocates and sufferers believe women in particular are viewed as being unable handle certain levels of pain.
Chronic pain is termed broadly as either prolonged pain that persists when injury or illness heals, or pain that is associated with a chronic condition.
“The term chronic just means long term, not severe. This is a common misnomer,” Chronic Pain Australia (CPA) President Dr Coralie Wales told ten daily.
For Jamieson, there are only worse days.
“It flares up when I am really stressed, if I haven’t eaten well or if I haven’t been doing my exercises, so I have to be really mindful,” she said.
The Sydney artist was diagnosed when she was about 22, following years of blood tests, bone density scans and visits to doctors who she says were dismissive of her symptoms.
“It started when I was around 15. I was told it was growing pains for years,” she said.
“It becomes difficult as a female having it recognised. Different GPs tend to look at it based on the old concept of hysteria -- women not being able to handle certain levels of pain, of them just being a bit of a sook.”
Wales said the process of stigma commonly starts with medical contact.
“Sometimes patients will present with symptoms that are medically unexplained. If it can’t be seen on an x-ray, it becomes invisible,” she said.
“Then you get this disbelief that renders the condition illegitimate.”
Jamieson, who has leaned towards female doctors ever since, said feeling like a “second half citizen” has impacted her mental health.
And she isn't alone. A new survey by Chronic Pain Australia of more than 1,200 sufferers found 86 percent reported facing stigma or negative attitudes.
Some reported being treated as “drug addicts” or “doctor shoppers”, while others said they were told by doctors their pain wasn’t as bad as they suggested.
“If a person is continually referred between doctors, the pain can worsen in that time, and become chronic,” Wales said.
Awareness of chronic pain is improving, with a growing body of evidence showing a multi-pronged approach can be effective for managing pain. But options remain out of reach.
The survey found 87 percent of respondents who accessed allied healthcare found it was prohibitively expensive.
Jamieson has private health insurance, but she said juggling medical tests, visits to her chiropractor and psychologist as well as supplements and groceries to manage her pain can cost upwards of $300 each week.
“That is just to stay on top of it, let alone if it flares up,” she said. “If I have to take a day off work, that’s more money gone.”
CPA is calling on greater funding for services and an increase in the number of allied health visit available for sufferers on a chronic disease management plan.
Wales also urged the federal government to review access to the disability support pension.
When it comes to treatment options, about 75 percent of respondents want their GP to be able to prescribe medicinal cannabis for pain relief.
Citing a recent study published in the Lancet medical journal that found cannabis does not reduce chronic pain, Wales said more research needs to be done.
“There are hundreds of cultivars, and we have not done research into all of them. That does not mean some varieties are not helpful for those in pain,” she said.
“We all want evidence-based practice, but we need to remain broad-minded.”
Above all, Jamieson and Wales want to see more awareness spread across both the wider and medical community.
“This is a niche area. We need more seminars, more education for GPs and in schools,” Jamieson said.
“I think we need to spread the concept of not being quick to judge. If you see someone that looks perfectly well going into a disabled parking spot, don’t question them. They might be a lot more unwell than you would assume.”