By Juila Baird*, ABC
Opinion - It's hard not to watch Apple Cider Vinegar without experiencing a slow boiling rage.
Rage at cancer patients shouting at doctors and (fatally) refusing their advice, rage at con-artists pretending to be ill in order to garner a following and monetise the misery of others, rage at the continual elevation of quackery, of false cures and false hopes and rage at those who purvey and profit from expensive, unevidenced treatments that can make people sicker.
If you have somehow missed the story, Belle Gibson was a young influencer and app-creator who lied about having cured herself from brain cancer she never actually had with food and alternative therapies. She developed a successful "wellness" brand, advocated against conventional medical treatments and purported to raise money for charities - little of which she ever passed on.
In 2015 she finally admitted "none of it is true".
Vanity Fair called her "one of the most hated women in Australia".
Few things incite headlines as quickly as a fraudulent female fantasist and, years after the Federal Court found Gibson guilty of engaging in misleading and deceptive conduct, and fined her $410,000, her story continues to be told.
A new Netflix series, Apple Cider Vinegar, picks a sticky way through her webs of deception, trying to explain how it all happened, fathom how so few questioned her, and highlight the dangers of lack of interrogation of such claims (in short: people die).
The series, which Netflix says is a "true-ish story, based on a lie", also features a character based on wellness blogger Jess Ainscough who sought alternative therapies for cancer (as well as medical treatments) but sadly died at 29. Her family is furious at her false depiction as a rival to Gibson.
Rocketing down a rabbit hole
Now, another a documentary titled Dangerous Lies: Unmasking Belle Gibson involves further head-scratching.
I rocketed down a rabbit hole after watching the series, as I suspect others have too.
First, the original articles by the journalist who broke the story, Richard Guilliatt, who has queried its accuracy and called it an "over-caffeinated, pop-soundtracked caricature … a drama about a real-life compulsive liar, told with little regard for the truth". Having been written out of the story, Guilliatt suggests it's a "bit rich" that his own wife's breast cancer was "grafted onto" the plot line, connected to a fictional journalist.
Then I found myself looking at Ainscough's Instagram, and that of her partner, whose heartbroken posts are interspersed with his finding new love, and was cheered by his recent marriage. I went back and watched the 60 Minutes interview with Tara Brown and saw in Gibson the face of a woman accustomed to lying, to employing loopholes of language, basting in her own contradictions as Brown turned her on a spit of accountability.
So what does all this mean for cancer patients?
The level of public loathing for Gibson has become so high and feverish that one 29-year-old woman who has terminal stage four bowel cancer - Kellie Finlayson, a mother and the wife of a Port Adelaide AFL player - says that she has been compared to Gibson "countless times, several times a week", which is "a big punch to the face".
"It's kicking me while I'm down," she told one reporter, but she believes people are doing it because she has sought alternative therapies and often looks well despite her illness.
"Being called this woman's name is offensive - it's abusive almost," Finlayson said. "Having gone through the things that she described … or pretended to have gone through and the way she manipulated people around her to empathise and to give her so much … it makes me physically ill."
The answer is to elevate science
Photo: Netflix
I also can't help but feel concerned about one aspect of having cancer that seems to have been lost in all of the indignation about Gibson's pathological lies: it can be hellish traversing the medical system sometimes.
I say this whilst sharing this indignation and advocating, at all turns, science.
I have had uncharitable thoughts about people who advised me, after my own cancer diagnosis, to take some concoction that cured their Aunty Beryl, to drink vats of cucumber juice or to just think positively, which one woman I met claimed sorted her cancer right out.
If there was legitimate research finding sleeping with crystals nestling in our armpits would prevent or shrink tumours, we'd all do it, night after night.
But the answer is not to patronise or dismiss as mad cancer patients who seek gentler, less stressful routes. If we want to avoid the potentially fatal sway of canny fabulists like Gibson, the answer is not to ridicule patients but to elevate science, to put more money into cancer research.
Let me say baldly, I have had recurrent cancer and I have dutifully followed everything my doctors have told me to do. But I'm fully aware that it is a rare type, and under-researched, so much of the treatment guess-work. Smart guess work, done by smart people based on the available science. Which is why I have followed it.
But like many, I have had bad experiences too. My usual surgeon is brilliant, dogged, and exceptionally hard working. I am indebted to her. But I once consulted, and trusted, another surgeon, who ended up being contradictory and dismissive once his proposed treatment failed.
After my last appointment with him, I was so shocked by his blunt, almost cavalier approach that I struggled to sleep for several months - as did my friend who came with me. It was a truly awful and avoidable experience that made me wonder if we are doing enough to equip medical professionals to deal with the mental pain and uncertainty of chronic illness.
Medical staff can say incredibly insensitive things; people can get lost in the whirr of machines, the pinging of MRI lasers, the draining of blood, the pricks of cannulas.
This is often why people who are desperately ill turn elsewhere - because it can be so hard to grasp what you are going through, because few of us have sufficient medical knowledge or scientific understanding to be able to comb through academic journals and be satisfied about the correct route to take. Because it can be bewildering and overwhelming and sometimes the cleverest of doctors can be the worst communicators.
Don't be distracted by influencers
US actress Kaitlyn Dever in Netflix's Apple Cider Vinegar. Photo: Netflix / Ben King
People don't refuse treatment just because they don't want to cut off an arm - as was suggested in Ainscough's case - but because they don't understand the complexity and uncertainty and, especially for those with rarer diseases, the gaps in research. Because they seek some semblance of control and fear the pain and toxicity of treatment.
The story of Belle Gibson is an important one, and it should be widely known for several reasons: so that we might avoid snake oil, challenge misinformation, question bogus medical claims, recognise what ignoring medical science might mean, and - allow me this - also witness the importance of good, properly funded investigative journalism. As well as shoddy journalism, of course - those who platform people claiming to have unproven miracle cures without demanding evidence.
In an era of increasing distrust of science, medicine and vaccines, we urgently need scientists and doctors who can communicate effectively. We also need to understand the root causes of that distrust, rational or otherwise, if we are to save lives from destructive "self-healing". We need to ensure people trust their doctors.
But let's not be distracted by simply fixating on a group of women who people seem to love to hate - pretty female influencers - and ensure we keep the medical system accountable too. So much remains unknown about so many cancers; no funding can go to waste.
*Juila Baird is an author, broadcaster, journalist and co-host of the ABC podcast, Not Stupid.
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