This article was first published in the print edition of The Saturday Paper on Aug 15, 2020 as "Painful lessons".
Chronic pain scientist Professor Lorimer Moseley.
Rebecca McDonald has never been a particularly anxious person. But when the Covid-19 pandemic broke out in Australia, she had a panic attack. Three years ago, McDonald was diagnosed with rheumatoid arthritis, an autoimmune disease that causes joint inflammation and chronic pain. Her treatments include immunosuppressive medications that put her in the vulnerable category of a regular flu season, let alone a worldwide health emergency.
At the start, when very little was known about the new coronavirus, McDonald was terrified. “The beginning of the pandemic was the most anxiety-inducing time of my life,” the 26-year-old says. “This was the beginning of the emotional roller-coaster leading to the biggest flare I’ve had to date.”
Covid-19 is causing healthy Australians to have sleepless nights, but for the more than three million people living with chronic pain, these are especially tough times.
Initially, people wanted to know how the virus could interact with chronic conditions and medications, says Carol Bennett, chief executive of national peak body Painaustralia. Some were concerned about the availability of drugs such as hydroxychloroquine, which is used to treat the chronic conditions rheumatoid arthritis and lupus, and which has in some circles been touted as a possible preventative treatment against Covid-19. Others could not access even basic painkillers such as paracetamol due to panic buying.
Then it was about the mental health challenges – loneliness and lack of support – says Bennett. “Fifty per cent of the people we talk with have serious mental health conditions, but they don’t identify with traditional mental health services or even [with] having a mental health problem,” she says.
Pain scientists have discovered that chronic pain symptoms are the result of a complex and dynamic interaction between biological, psychological and social factors.
“There’s a lot of evidence to say that in people with persisting pain, if they become more depressed or anxious, their pain usually gets worse,” says Professor Lorimer Moseley, pain scientist and chair in physiotherapy at the University of South Australia. “In the same way, if you’ve got persistent depression and you develop an injury, then the depression gets worse.”
Although most of us believe pain is always a flag of tissue damage or disease, researchers say it does not always measure the severity of the injury. Pain is a protective mechanism that helps us avoid getting badly hurt. If our brain perceives a situation as harmful, it will produce pain to draw our full attention to it. As an example, we feel pain if we touch a hot pan handle, and that stops us from picking up the pan.
So pain is more a reaction to danger than it is to damage. But when pain becomes chronic, our protective system is constantly on high alert and can produce pain even for small threats. “If you have persisting pain, then any time you’re under threat, your system seems to increase the protection level,” says Moseley.
“What [people with chronic pain] are experiencing is pretty normal. It’s a really sensible response of their system that is always trying to protect them. They’re in a world that feels under attack from a virus. And that’s a threatening situation.”
The uncertainty caused by Covid-19, fuelled by the constant media coverage, conflicting information and the unknown duration of this pandemic, seems the perfect breeding ground for increased chronic pain. Moseley says we don’t have the data to know that for sure, but it makes sense. “It strikes me that there is a level of existential threat going on that we haven’t really had in our community before,” he says.
“What [people with chronic pain] are experiencing is pretty normal. It’s a really sensible response of their system that is always trying to protect them. They’re in a world that feels under attack from a virus. And that’s a threatening situation.
“There’s good news and bad news,” Moseley says. “The bad news is that you’re getting more flare-ups. And that’s horrible. But the good news is that your flare-ups are not happening because your body is breaking. Your flare-ups are happening because your protective system is on driver alert, and you can help train your protective system not to produce these alerts.”
Moseley thinks chronic pain represents a unique challenge in healthcare because the understanding of pain within patients, health professionals and decision-makers is based on the wrong assumption that chronic pain is an unresolved injury in the body. “And that presents a massive problem,” he says, “because if it were that, then the best treatments we have would be treatments trying to fix the broken body part. But it’s not that.”
Instead, he suggests the best available treatments we have today focus on scientifically accurate education and active self-management skills. These include learning to break the pain-equals-damage cycle, sticking to a routine, participating in social life, accessing support groups, physical activity, reducing stress and looking after mental health.
Unfortunately, since the pandemic struck, many of those pain-management strategies are no longer an option. “These are some of the most disadvantaged people in society, and they have very little support at best of times,” says Painaustralia’s Carol Bennett.
After not seeing her mum and her daughter for weeks, Clytie Gainey’s mental health started to deteriorate, and painful flare-ups became more recurrent. For Gainey, getting out of the house and being social even for a short time helps with her pain. “The phone and video chat just doesn’t do it,” she says.
Gainey, who lives in Victoria and is currently on her second lockdown, has had chronic pain for the past 12 years and suffers from major depressive disorder and anxiety as a consequence. “A lot of my support systems are shut down during this time and even before, with the [bush]fires,” she says, “I feel totally alone and abandoned.”
Even her regular GP visits are cancelled. Healthcare professionals have been diverted to Covid-19-related activities, and wait times are longer than usual, especially for medical illnesses such as chronic pain, which many consider non-urgent.
While the rapid evolution of telehealth has mitigated the disruption the pandemic has caused, not everyone has embraced it. But for people living in remote areas of the country, telehealth means they can now access adequate pain-management care that wasn’t previously available. In fact, most pain services are located in major cities yet people living in rural Australia are 30 per cent more likely to suffer from chronic pain. They have higher rates of medication prescription and are less likely to be referred to a pain specialist, largely because options for best-practice management beyond medication are limited.
Unfortunately not everyone has access to or is comfortable with digital technology. For some, such as Gainey, the trip to the doctor represents an opportunity for social distraction. “Nothing beats the human contact,” she says.
While the pandemic has thrown up myriad fresh challenges to people suffering chronic pain, one silver lining has been flexibility in the ways we now work. For McDonald, working from home has given her the freedom to manage her pain while still being productive.
“I could wear clothes that didn’t hurt,” she says. “I could get up and stretch or put an ice pack on at the desk. It was wonderful.”
Although she admits to missing the easy conversations with her colleagues and says she sometimes feels lonely, “there is a whole community of people like me who thrived from working from home”.
McDonald hopes that flexibility at work will remain an option after the pandemic. “There are already conversations happening,” she says. “There’s that sort of realisation that flexible working, it works. And people can adapt.”
Hopefully for chronic pain sufferers such as McDonald and Gainey, as Australians learn to live with a new “Covid-19 normal” and the pandemic comes more under control, their physical symptoms will also start to ease.