Millions of Australians experience chronic pain. Here’s what their lives are really like

There’s a demon living in Anastasia Massouras’s head.

Or at least that’s how she describes the feeling of a cluster headache, a condition described in some circles as the worst type of pain known to humans.

WARNING: This story contains reference to mental health and suicide.

So strong is the intensity of pain, the condition is also known as “suicide headaches”.

Ms Massouras has lived with the condition for almost five years, with the headaches lasting hours, sometimes occurring multiple times a day.

This is more than a migraine, she says. Much more.

“It’s one of the most debilitating and excruciating experiences of pain I’ve experienced,” she says.

The 44-year-old has been through three natural childbirths and says she’d much rather that pain than a cluster attack. 

“It’s like having a worm crawling through your head that expands into octopus arms,” she says. 

‘Debilitating’ costs and a lack of options

Navigating chronic pain is the norm for at least 3.4 million Australians, leaving many out of pocket for huge amounts and desperate for reprieve. 

“From referrals for specialists, to medication and therapies, when you add up all those expenses, the cost is debilitating for most people,” Chronic Pain Australia (CPA) chief executive Renee Rankin says.

The annual cost of chronic pain could rise to $215.6 billion by 2050, CPA estimates.

Ms Massouras has “no idea” how much she’s spent since first getting cluster headaches four years ago, but estimates it to be at least $30,000.

She was initially prescribed “heavy” prescription medication to provide relief, but it made it hard for her to function. 

“I’d end up being a zombie. I wouldn’t be able to function, parent … and run my business,” she says.

Since then, she’s tried dozens of other medications and supplements. She’s also attempted, without success, to access alternative treatments such as oxygen.

But nothing has really worked and she now relies on 12 anti-inflammatory tablets per day “just to survive”. 

“Is it the solution? No. It’s probably causing other health challenges as well,” she says.

Access to pain management a common issue

No matter the cause of someone’s chronic pain, treatment is hit and miss.

Paul Glare is the director of the Pain Management Institute at Sydney University and works at the Royal North Shore Hospital’s pain clinic assisting people living with a range of chronic pain conditions, including fibromyalgia, arthritis, back pain, IBS and cancer patients. 

“Chronic pain is a big challenge,” he says.

Professor Glare says about half of all sufferers live with “high-impact pain” that stops them from performing daily tasks. 

“I think it’s useful to separate them from people who have got chronic pain and are getting on with their life … the big problem is where it’s interfering with their functioning, both physical and emotional,” he says.