Body of misery: Learning to live with chronic pain
How much does pain cost? By my reckoning, thousands of dollars on specialist and GP visits, hundreds of hours of missed schooling and sports days, hundreds of dollars on vitamins and supplements that the internet told me would help and didn’t, and most recently, $700 on CBD oil, which did.
In other words, I can’t even count it. I am 24 and live with constant chronic pain. At 21, my pain received a name – stage 3 endometriosis, adenomyosis and painful bladder syndrome. Since the day I got my first period, I have had, and continue to experience, a burning sensation of pain in my pelvis, and sometimes in my legs, back, arms and even my feet. Relief is occasional, for a few months at a time, depending on my current treatment regime. When the pain is searing, it lasts a week. The level of the pain and how often it occurs have reduced over time as I’ve had treatment. It’s now about 30% of what I suffered at age 20 but I could still wake up tomorrow with a flare-up.
Over the years, I became very good at hiding my pain.
One in five
There are publicly funded pain clinics throughout New Zealand but waiting lists are long. Specialist doctors in the field estimate something like one in five New Zealanders live daily with chronic pain that causes some loss of functionality. It can come from hard-to-treat conditions such as endometriosis, or arise from illness, an accident or surgery gone wrong. The cost to the country is an estimated $17 billion a year in lost production, welfare benefits and healthcare costs.
“More people have chronic pain than smoke,” says Buzz Burrell, a GP who is just one health sector advocate for more resourcing to understand and manage pain [see “Stuck signal”, below].
Managing chronic pain feels like treading water, trying to stay afloat each day. There’s no silver bullet to just fix it, and it makes me wonder if my struggle is a consequence of the shortcomings of the healthcare system. Would I be in far less pain if the system was better equipped?
Even writing about my pain means having to confront very unpleasant memories. In the grand scheme of things, my health otherwise is just fine, and for that I am grateful. I also am incredibly fortunate and have always had the best access possible to specialist healthcare, thanks to my parents being able to afford family health insurance.
Like many people, I wish I’d known and been able to understand my chronic pain sooner. I would have felt less like an alien, less of a drama queen at times. With 20% of us suffering pain to some degree, the chances are that the person next to you on the bus, serving you in the restaurant or sitting at the desk opposite is suffering, silently or not. Chronic pain exists in every family, friend group, sports team, school and workplace. Because chronic pain is invisible, we often forget that it’s there.
When I talk with another chronic pain sufferer, our experiences will often be sadly similar – from misdiagnosis to misunderstandings and the long, rocky road to working out what was going on.
Hot in the kitchen
On the outside, I look fine. I went to university and graduated with a master’s in politics with distinction. I’ve always loved to cook, especially baking. Some fun times cooking for my flatmates led me to audition for the 2022 MasterChef New Zealand TV series. I ended up in the top three and it set me on a new path, putting aside a planned PhD to work as a pastry chef at top restaurants: Auckland’s Baduzzi and Queenstown’s Amisfield, and now, back in Auckland, Paris Butter.