Australians living with chronic pain are fighting to be heard. It’s a ‘vicious cycle’

Ten metres. It’s a distance most people would cover in a few strides without much second thought.

But for Perth resident Roberta Lilley, it’s as far as she can go without suffering excruciating pain.

“The day after, I am in so much pain it’s difficult to eat,” she told 7NEWS.com.au.

“I can’t brush my teeth, I can’t brush my hair.

“I can hardly stand on the floor because the soles of my feet feel like they’ve been cut with razor blades.”

Everything in Lilley’s life is coloured by pain from fibromyalgia — an incurable condition that causes widespread body pain, fatigue and cognitive issues.

It’s an experience she would never wish upon anyone, but Lilley is not alone.

Lilley is one of the 3.6 million Australians living with chronic pain, the most common of which are widespread pain such as fibromyalgia, back pain and nerve pain, according to the new Chronic Pain Australia National Pain Report.

This week’s CPA report found nearly half of respondents had to stop working because of their pain, and almost 30 per cent have had to limit their hours.

“I think there’s this general idea that people don’t want to work and so they say they have these conditions, but it’s absolutely the opposite,” Lilley said.

“It took me years to get used to the idea that I most likely will never work again, and that’s very difficult to cope with.”

Chronic pain seeps into your personal life, too, with two thirds of people revealing the strain of their condition was damaging or destroying their relationships.

Nearly half of all respondents have thought about taking their own life.

Life with chronic pain is “fighting all the time to get someone to hear you”, said Perth resident Paula*, who lives with rheumatoid arthritis — a disorder that causes inflammation across the body, including intense joint pain.

“It has all these side effects that affect everyday life,” she told 7NEWS.com.au.

“If we do something that you take for granted — go to a party, you know, be part of a wedding — just everyday things, we suffer for days and weeks after because we did it.

“That’s really hard on families, it’s hard on kids to understand, it’s hard on partners to understand.”

Some days the pain is so severe she wakes wishing she could just cut the limb off.

“People don’t even know you’re suffering,” Paula said.

“They say it’s the invisible disease, how can you tell if somebody has chronic pain when you can’t see it,” Lilley added.

A vicious cycle

Finding support and treatment is a lengthy process, with 45 per cent of people saying it took longer than three years to get a diagnosis.

Once diagnosed, most survey respondents found multidisciplinary care, which is considered the gold standard to tackle complex pain conditions, was not yet available, with only one in five having been referred to a multidisciplinary pain management program or clinic.

“It is really difficult to find doctors who are willing to put the time and effort into treating people with things like fibromyalgia or chronic conditions,” Lilley said.

“There still are a lot of doctors around that just don’t believe fibromyalgia is a real condition.

“They treat people who have chronic pain conditions like they’re drug seeking.”

Chronic pain was a “vicious cycle” for those living with it and a drain on society in general, Chronic Pain Australia president Nicolette Ellis said.

“Chronic pain is taking far too long to diagnose, and multidisciplinary pain management, which offers the best hope for controlling this complex condition, remains largely inaccessible,” she said.

“As a result, many respondents to the National Pain Survey have had to stop working or cut back on their hours, costing the workforce skilled workers at a time when employers are struggling to fill roles.

“Without access to patient-centred, multidisciplinary care, people living with chronic pain are at risk of a lifetime of disability that leads to serious mental health issues.”

Paula agreed.

“The tragedy is that medicine is not doing as much as it could do,” she said.

“The thousands of people that are still coming up, the young ones that are slowly being diagnosed, my heart breaks for them.

“It’s not a good life to look forward to.”

Every day is a challenge, but “you do what you have to do” to get by.

“I think that as much as these diseases are cruel and they really do take your life, you’ve got to fight back and you’ve got to do what you can,” Paula said.

*Surname withheld for privacy