Chronic pain sufferers continue to fight stigma to get relief and diagnosis

Chronic Pain, Massage, Acupuncture, Sherwood Park, Edmonton

One in five Australians live with chronic pain — its health burden costs Western society almost equal to diabetes and cancer combined. Despite its prevalence, there's still stigma attached to chronic pain among medical professionals and the community which can have a lasting impact on sufferers.

Psychology student and model Isabella, 22, has experienced pain so intense her body went into shock and she was unable to walk. She developed the "excruciating pain" throughout her whole body at age 15 and at first doctors thought it was "all in [her] head".

"I would wake up in the night screaming from the pain because I had accidentally moved my leg in my sleep," the 22-year-old said. "I would sometimes physically drag myself to the bathroom on the floor because I couldn't stand."

Isabella's neurologist believes she suffers from a complex neuroimmune disease called myalgic encephalomyelitis (ME) — a disease that can lead to lifelong disability and chronic fatigue syndrome. She said doctors believed her pain was "all in [her] head" due to her young age and physical examinations, like blood tests, indicating a clean bill of health.

"Having doctors treat me like [that] made me feel like I was insane and like it was my fault," she said. "[I wish] that there was support and I could have seen a doctor and not been told that I'm crazy."

It's real, not some fantasy.

Sam had to "jump through hoops" to get a diagnosis after suffering muscle pain and tenderness in his hips for two years because medical and allied health professionals did not take his condition seriously. He was eventually diagnosed with fibromyalgia in April this year.

"There are doctors that are quite dismissive, there are others that don't seem to understand what you have going on and therefore you are a burden to them and a liability," he said.

When Sam tested negative for Multiple Sclerosis (MS), his specialists did not investigate his symptoms further.

"The implication being that because my results [were] negative, the pain was in my head," he said. "People have to understand ... you're not going to let some fantasy of pain screw your life up."

Misunderstood because it's something people can't see. Pain Australia chief executive Carol Bennett said the pair's experience with medical professionals wasn't isolated and could have a lasting impacts on sufferers.

"There is a very high level of misunderstanding when it comes to young people and chronic pain ... because there's no particular injury, there's nothing people can actually see," Ms Bennett said. "When you talk about conditions like depression we have seen a greater and growing understanding of that condition and the impact it can have."
"Pain has, generally, not been an issue that people have thought through or think about so we need to turn that around like we did with depression."

But leading pain scientist Professor Lorimer Moseley, who runs the research team Body in Mind in Adelaide, believes health professionals are becoming more equipped to treat chronic pain through greater education.

He said while sufferers were commonly "doubted, perceived as illegitimate and totally stigmatised", the specialists' approach to pain had changed in the past 20 years and was "still emerging".

"I believe more chronic pain sufferers will get better care and won't be stigmatised because there is now better understanding in the medical and health world," he said.

This week is National Pain Week.

This article originally appeared in ABC Australia & was written by Samantha Dawes.