Earlier in the year I was interviewed by a student, Emily McCarthy, writing a creative non-fiction piece on pain management. Emily interviewed me about my lived experience of managing pain as well as research I have contributed to.
Emily also interviewed Toby Hall a clinician with extensive experience helping people to manage their pain.
I’m so glad Emily wrote this piece. I think Emily gives insight into the complexities of living with, and helping to support people with, pain. Emily has kindly said I could share her work here.
When pain persists – Emily McCarthy
One in five New Zealanders live with chronic pain. Having never experienced persistent pain herself, Emily, a student at Victoria University, went on a journey to understand chronic pain and how it is managed in Aotearoa.
I recently flew over the handlebars of my mountain bike and gashed my knee – deep. The pain kicked in when I made it back to my car. I flushed the wound with saline, pulled the flesh together with butterfly tape, wrapped it in a bandage. Pain protects.
For the next week, it hurt to put pressure on my knee. My gash made me hobble, favouring my left leg while resting my right. The edges of the wound grew towards each other. Pain heals.
When I went biking again the following fortnight, I slowed down on that gnarly corner, made it round unscathed. Pain teaches.
The pain was transient. And it was helpful, my body and brain’s way of working as a team to tell me to clean my wound, to take it easy while I healed, to teach me a lesson about risky activities.
That’s what pain is meant to do, and it’s great when that’s where it stops. But sometimes pain goes overboard. It lasts for months, sometimes in the absence of tissue damage or threats. Pain persists.
“Pain is really good,” Dr Hazel Godfrey told me. Hazel is an academic who researches pain. “It’s just that when it goes wrong it’s really awful for the person and their family.” Hazel’s insights come from two places – her academic research and her lived experience. Hazel has fibromyalgia.
There are a multitude of pathways to persistent pain. Changes in the brain, lasting tissue damage, aberrations in the way the mind and body communicate with each other – all can cause chronic pain.
Hazel was diagnosed with fibromyalgia in her first year of university. “I just started getting tired – abnormally tired – and sore all over.” Her pain made it hard to think, hard to sit for long periods of time, hard to operate as she’d been used to. It intruded. Hazel’s experience fit the description of fibromyalgia – fatigue, widespread muscle and joint pain, pressure-induced pain at specific trigger points, and no explanatory cause.
Sometimes pain makes no sense – a 2012 survey found that doctors were unable to identify the source of chronic pain in one in ten patients. But even without a diagnosis, the pain is very real.
Hazel is one of 763,000 New Zealand adults living with chronic pain – that’s one in every five. And with population aging, she’ll be joined by more kiwis each year – persistent pain disproportionately affects older people.
Pain takes a toll. People who live with pain can find it hard to sleep, maintain relationships, keep jobs, do their groceries. Pain can be debilitating. At its worst, Hazel’s pain left her effectively bedridden for a year.
On top of the physical effects of pain, people living with chronic pain often experience anxiety, depression, and other mental health challenges. Knowing what it’s like to live with pain, Hazel described the associated mental health challenges as “not surprising.” Chronic pain is pervasive.
The impacts of pain go beyond the individual. The estimated financial costs of chronic pain in Aotearoa reached up to $5.3 billion in 2016, with lost productivity being the most significant contributor. If you attempt to put a dollar figure on the loss of wellbeing experienced by people living with persistent pain, the total cost approaches $15 billion each year – more than two times the GDP of Fiji.
So what solutions are available for people living with chronic pain? Well, there are no silver bullets – managing pain is a science and an art.
Toby Hall, a chiropractor at the Featherston Street Pain Clinic, certainly views it that way. He describes himself as a mechanic, a mechanic with intuition, the ability to listen and empathise, observe and understand. “Pain links up to a person’s inner self,” Toby told me. It can’t be diagnosed with a blood test or seen under a microscope. It can’t be cured with a pill. “It’s a very subjective part of life.”
Depending on the person, the prescription differs. But for Toby, movement is at the core. “Movement is medicine.” Gone are the days of recommending bedrest and neck braces. To manage pain, you must move.
Toby encourages his patients to adhere to his prescribed movements like a dentist tells you to brush your teeth. “I teach people really simple exercises but I try to get them to do those exercises for five minutes a day everyday forever.”
When I asked Hazel how she manages her pain, she told me that it’s like a fulltime job. To live her life well with pain, Hazel has to stretch, go for walks, use a foam roller. She has to eat healthy, stay connected to her support network, rest. Frankly, these sound like great tips for all of us. But for Hazel, they’re non-negotiable – pain will exploit any lapse in vigilance. “I’m hyper-organised,” Hazel told me, “I have two diaries.”
Medication also plays a role. There are issues – Toby mentions the US opioid crisis and Hazel mentions the prohibitive cost of cannabidiol in Aotearoa – but some things work for some people. Researchers are hunting for new medicines for pain management that aren’t addictive – but it’s a long hunt and only part of the puzzle.
When I asked Hazel whether there were any developments in pain management on the horizon that she was optimistic about, she burst my bubble instantly. “Sadly no.” Part of Hazel’s pain management journey has been coming to terms with the reality that there is no simple cure. She doesn’t expect that she’ll ever get to live free from pain, but over time she has come to accept that she can live a good life with pain. “But it’s always complicated, and sometimes I still get very frustrated.”
Something Hazel was very clear about is the fact that pain doesn’t exist in a vacuum. “The person in pain doesn’t exist apart from the world.”
For her pain management strategies to work, Hazel needs the support of her family, friends, and workplace. “If you’re working towards these things on your own it’s not very likely to succeed.”
Hazel’s friends and family are crucial to her wellbeing. “They…remind me when I’m having a bad time that it does ease, it’s just that it’s hard to see…in that moment.”
And her workplace knows about her fibromyalgia. She views telling them as essential: flexible working arrangements enable her to manage her pain while being active in the workforce.
Talking about her pain isn’t just about getting the support she needs for herself. Hazel also sees it as a way to heighten understanding of the prevalence of the issue, bust through stigma, and provide a supportive community for others living with pain. Acknowledging the presence and impacts of chronic pain in Aotearoa, making the invisible visible, can go a long way.
Toby and Hazel’s approaches to pain management – movement, support networks, persistence, the involvement of allied health professions, and a focus on the body and brain – are evidence‑based. But good chronic pain care isn’t always easy to access.
Waitlists for pain management programmes in Aotearoa are months long. Hazel’s helping with research into online tools for pain management, but acknowledges that in-person care remains critical. Getting really sick seems to be one of the best ways to reduce your wait time. “I was so unwell it meant I got fast tracked,” Hazel told me as she reflected on her referral to a 12-week pain management programme.
In 2018, Aotearoa had an estimated 11 fulltime pain medicine specialists. Based on international recommendations, that’s less than a quarter of what we should have.
We don’t have a national pain management strategy, while similar countries – like Australia – do. And funding for pain management is often threatened.
“Because it doesn’t kill you directly it doesn’t get the money,” Hazel said bluntly.
Every now and then I run my thumb over the mountain biking scar on my knee. The skin is puckered and purple but the pain is long gone. I’m lucky. For me, pain protects, heals, and teaches. But for too many kiwis, pain persists.
For something that costs so much – personally, nationally – it seems like Aotearoa has plenty of room for improvement.
(This blog was written as part of an assignment in a Victoria University Science Communication paper – more details here. Hazel coordinates and lectures for a Vic Uni paper called Science in Every Day Life, which has a module on pain – more details here.)