Interacting with any aspect of our health care system makes Aroha Gilling extremely nervous. She’s had to develop a self-coaching routine to get herself through a doctor’s appointment, no matter how straightforward the medical reason for the visit might be. Here, she reflects on why things have got that bad.
Recently, while on the way to a medical appointment, I stopped at the vet to collect my dog’s medication. The vet nurses were lovely, and their service was quick, informative, and filled with warmth and humour.
I was left in no doubt that they saw me as just another caring and loving dog owner. There wasn’t the faintest hint of judgment or fear. But when I arrived at my own GP appointment, I had to steel myself and breathe deeply to even get in the door. It ended up being a perfectly fine visit. So, what was all the anxious wheezing and need for encouraging self-talk about, I wondered to myself. What made a perfectly reasonable, mature woman in her 50s behave like a stricken teenager about to walk in the door of her first school dance?
It’s taken me a while, but I’ve realised that what I was really facing up to in that moment is the insidiously racist “care” I’ve received from medical professionals throughout my life so far.
I grew up in the lower South Island in the 1970s and ‘80s. My whāngai mum was a doctor. She had her own rural GP practice when I was very young, and then, as I neared school age, she transferred to hospital roles in an urban area so that I had more options for schooling.
So I grew up around medical professionals and learned to expect a certain level of care and compassion. It wasn’t until I was at university that I realised it was just the power of my mother’s name, presence and reputation that led to the good care and professional behaviour. When I was on my own, I was shocked to discover that I was perceived quite differently and treated very poorly.
In my second year of university, I pulled a standard all-nighter before an English exam. English is a subject I’m proficient in, and I expected to do well. I visited Mum the evening before the exam, and she made me a roast beef sandwich to take home. I planned to use the sandwich as my reward for completing my swot. It was early morning when I finished cramming and I thought it would be nice to sit on the doorstep, enjoy my sandwich and collect my thoughts. In the low light, I missed seeing the broom that had fallen across the hall and I tripped on the handle. I threw my empty hand out to catch myself, while the hand desperately clutching my precious sandwich went straight through the glass panel on our front door.
My flatmates woke to the sound of shattering glass and I was shipped off to the emergency room to have my hand treated. The attending doctor insisted multiple times that I was lying about the fall and instead must have punched someone in the teeth. He also suggested that I was using the injury to escape sitting my exam. It wasn’t until the nurse produced a substantial piece of bloody glass from a deep wound on the back of my hand that he relented and stopped threatening to call the police. I missed the exam, received an aggregate mark, and felt thoroughly disheartened and somehow guilty, as though maybe I’d done something wrong after all.
My beloved mum passed away in 1996 and then I was truly on my own as far as medical care went. Over the next three decades, a key theme emerged. Every time I needed medical care, the issue was eventually linked back to my ethnicity.
Even something as mundane as rolling my ankle in the dim light, because I misjudged the angle of a steep descent while jogging at dawn, eventually circled back to a lecture from a doctor on the likelihood of me developing diabetes because I was a Māori woman. Surely sometimes a sprained ankle is just a sprained ankle!
Another doctor treated me for a fungal infection on my shins for nearly a year. The treatment involved frequent visits, creams and insinuations about my personal hygiene. Nothing she suggested helped the horrible, unsightly, and very itchy lesions, until an uncle from my birth whānau, who’s a senior Māori doctor, took one look at my legs and diagnosed discoid eczema. He prescribed a steroid cream that eased the ugly wounds overnight and completely repaired my legs within a couple of weeks.
Another doctor refused to believe me when I said that I have an allergy to penicillin, even though it had been documented by my mother when I was very young. The doctor prescribed me penicillin, and deciding to trust her, I took it. Sure enough, over the weekend I developed an all over body rash that was extremely distressing and uncomfortable.
In my mid-40s I suffered an episode of gout. Once again this triggered a lecture from a doctor on my health, eating habits, weight, and ethnicity. But the gout appeared at the same time as I was training for Iron Māori. I was running or walking six mornings out of seven, cycling, and swimming two or three times a week and carefully managing my food intake.
Then a white, middle-aged, male colleague of mine was also diagnosed with gout. We compared notes, and he said that from the onset of his very first symptoms, he was given medication. Whereas I’d been told that I must manage mine with diet and exercise alone. Medication was never discussed or offered to me, and no other treatment suggestions or care was provided. Instead, I felt judged, as if my personal decisions had once again been found lacking.
It was only after Iron Māori was over and my diet returned to normal that I realised my training protein intake relied too heavily on turkey mince, mussels and tuna, which are all high in purines, a known risk factor for gout.
Then my last breast screening produced an anomaly. It was duly sampled and cleared but a small marker was left in my breast for future reference. I was required to consent to this process, which I did. But when the doctor asked if I was happy with the procedure, I replied honestly that it made me very uncomfortable to have a foreign body lodged inside me permanently.
His response was to have two colleagues come into the room to try and persuade me to say I was happy. I made the point repeatedly that I consented to the procedure, and understood the need for it, but at the same time I didn’t have to be enthusiastic and could certainly maintain reservations. Still they harangued me, rather than listening to my perspective, an already challenging situation became many times more uncomfortable.
Last year, I decided to celebrate my birthday by redoing one of my all-time favourite Great Walks over three nights and four days. I last walked this track in the early ‘90s, but my aging knees were beginning to feel under strain. To make sure I wasn’t about to cause myself any undue harm, I went to the doctor. She told me not to worry about my knees and suggested I was making an unnecessary fuss. I came away from that appointment feeling like I was a hypochondriac who had wasted the doctor’s time.
Late on day one, after a steep climb out of the bush line, my right knee gave way. I felt like I had no control over the direction my knee was going and consequently my lower leg. This made walking very unpredictable, and the pain was uncomfortable and distracting. I soldiered on believing that there was nothing wrong with me that a bit of sturdy self-talk, anti-inflammatories and positive encouragement couldn’t overcome.
As the tramp wore on, my knee weakened and then my other knee joined in. Luckily there was a nurse with plenty of strapping tape on the track and she patched me back together. I completed the walk very slowly, including spending my birthday inching along carefully on my wobbly, painful knees. My tramping companion was fantastic support and the lovely folk I met on the track cheered me on. I’m comfortable being alone in the outdoors, and so I made it to the end and largely enjoyed myself, despite the discomfort and one 12-hour day.
When I returned home, I went to see a new doctor at a different practice. After some discussion, tests, and x-rays, she concluded that I have quite advanced arthritis in both knees. Had I been taken seriously beforehand, I might have chosen to celebrate my birthday from the bottom of the mountain, not the top.
When I reflect on these representative samples of almost three decades of medical sort-of care since my mother died, it’s no wonder I find going in the door of my GP’s surgery a daunting and fear-filled activity.
It was with great sadness that I recently listened to elite wood chopper and athlete Jason Wynyard’s story of his delayed and agonising journey to cancer diagnosis and treatment on The Hui. His story was heartbreaking and deeply and painfully familiar — misdiagnosis, repeat visits to the doctor, a misplaced sense of trust, dismissed fears, whānau advocacy, feeling that he was wasting the doctor’s time, and then the blow of a correct diagnosis delivered with little empathy or kindness. Jason’s whānau have since made a formal complaint. In discussion with The Hui presenter Julian Wilcox, cancer specialist Dr Maxine Ronald made this chilling observation: “We know that racism kills.”
When I began thinking more deeply about this topic, I also spoke to Māori friends and whānau about their experiences. While those are not my stories to tell here, they all had harrowing and similar accounts of interactions with the health system.
I was brought up to have a great respect for the medical profession. One parent was a doctor, the other a pharmacist, and we had wider family involved in health care. As an adult, that respect has been greatly diminished by the unexamined and uncontrolled personal bias, prejudice and racism in the profession that affects the care Māori receive as well as our ability to make good healthcare decisions. And I detest unrecognised and unexamined white privilege.
I’m an articulate person and able to advocate for myself, but even I struggle with this tsunami of racism that has threatened at times to wash me away. I’m worn out by the nagging feelings of worthlessness and self-doubt I experience when dealing with the medical system. What happens to people who aren’t articulate, don’t speak English as a first language, or are unable to defend themselves?
Surely all Māori have a right to expect treatment, compassion and care that is every bit as good as the outstanding service my elderly dog Sammy receives from our wonderful vets and vet nurses. Or am I setting the bar too high in a country that must still come to terms with its racist beginnings and entrenched white privilege?
- You can read about what one hospital in Auckland is doing to combat implicit bias in its staff in this piece by Teuila Fuatai.
Aroha Gilling (Te Whānau a Apanui) is an adviser to government departments on Te Tiriti o Waitangi and mātauranga Māori. She has a Master of Indigenous Studies from the University of Otago, and a background in adult education and social work. She lives in Nelson.
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