Just a couple of months before my breast cancer diagnosis in 2023, I took a train from Seattle to Portland. A podcast called Scamanda had been heavily promoted on my podcast feeds, so I settled in to listen for a few hours. Scammers are a subject of deep fascination in our social media saturated world, since we never know exactly who it is we’re interacting with. Bots and catfishing are one thing. But in the case of Amanda Riley, the subject of the podcast, things got much grimmer, because Riley faked having cancer for years and used social media and her Evangelical Christian church community to solicit donations for her “treatment” adding up to at least 100k. She is currently serving a five year prison sentence.
Hulu is running a documentary based on the Scamanda podcast, so naturally Netflix is simultaneously running a fictionalized version of the Belle Gibson story. Gibson, like Riley, pretended to have cancer and used social media and Instagram in particular to promote the idea that she cured her cancer by eating a plant based diet and drinking juice. Gibson got the idea from another wellness blogger, Jessica Ainscough, who called herself “The Wellness Warrior.”
Unlike Gibson, Ainscough actually was diagnosed with a rare cancer in her twenties, and refused surgery, chemo and radiation in favor of Gerson Therapy. This “alternative” cancer treatment involves also eating a plant based diet and drinking juice every hour of the day. It also involves multiple enemas per day using coffee or castor oil. Ainscough promoted the regimen on her social media channels, which got Gibson’s attention, so Gibson figured that having cancer would get her the same sympathetic audience.
Gibson told the world she had brain cancer and leveraged that into a cookbook deal and an anti-cancer diet app that was snatched up by Apple and used on the first generation Apple watch. Ainscough, on the other hand, died when her cancer returned and chewed up her body from the inside out. Her mother, who was diagnosed with breast cancer (this is changed to colon cancer on the show), also refused conventional medical treatment in favor of Gerson therapy. Breast cancer patients who refuse medical treatment in favor of alternative therapies live an average of 2.5 years, which is exactly how long Aincough’s mother lived on Gerson therapy.
Gibson isn’t in jail, but she did face reputational and financial ruin when a journalist started digging into her story. Watching both of these shows back to back, I wondered what range of emotions I’d experience as a real cancer patient. The answer turned out mostly to be rage, followed by schadenfreude when both scammers were exposed. That’s the arc of every scammer story. We get angry, and then we get to gloat in their downfall.
But that doesn’t change the fact that there are thousands more people out there promoting quack treatments for cancer, some of them cancer patients, some of them even doctors. This is a real hazard when the newly appointed Secretary of Health in the USA is an anti vaxxer and conspiracy theorist, and when cancer research at the NIH is throttled by Elon Musk’s DOGE. On top of this, social media, run by oligarchs only concerned with money and power, continues to be the engine that people use to drum up sympathy and support when they face a diagnosis. But to what degree is that really helpful when you actually do have cancer?
In the Scamanda documentary, the journalist Charlie Webster mentions experts agree faking cancer is a form of Munchausen Syndrome, a disorder where a person pretends to be sick because they enjoy the attention and sympathy. But most people with Munchausen also deal with some level of narcissism. And what feeds narcissism more than social media, where engagement is driven by stories of trauma, suffering, resilience, survival, and triumph over adversity?
I don’t mean to imply that every person who actually does have cancer and posts about it on social media is a narcissist. Being sick is deeply isolating. Cancer in particular cuts you off from other people for the duration of treatment because your immune system simply cannot cope, and for some people, social media is a helpful substitute for face to face support. And, of course, social media can be the only lifeline for fundraising since our healthcare system is so deeply corrupted by greedy CEOs that the guy who murdered one of them instantly became a folk hero.
GoFundMe accounts have paid for treatments for many people I know who really do have cancer. But when it came to talking about my own cancer online, the Scamanda podcast was fresh in my mind after diagnosis. “What if people think I’m faking cancer?” is something that still regularly runs through my mind today, even with my flat chest, stubbornly short hair, missing teeth and sallow complexion as persistent physical evidence.
And as a person who writes about religion and in particular how religion can contribute to physical, psychological and spiritual abuse, the fact that Amanda Riley manipulated her Evangelical megachurch into making her the center of attention hits just a little bit too close to home. I don’t belong to a parish and haven’t for years, and never asked anyone to pray for me. People offered, and I said thanks when they did. But the idea of having an entire church laser focused on my personal suffering means that church is not focused on much larger issues like poverty, mass incarceration, and systemic racism. It means that my illness matters more than everyone else’s. And contrary to JD Vance, who claims that Jesus told us to love those closest to us more than strangers and was scolded by the pope for saying this, Jesus actually said the opposite. Agape love means the stranger deserves the same kind of love as your family and friends. It means the world’s suffering matters as much as your personal suffering.
In the attention economy of the moment when we are bombarded with bad news and constant reminders of the world’s needs, my relative economic and social privileges meant that my cancer treatment wasn’t really as bad in comparison, say, to someone with a large number of children, someone with a rarer cancer that’s harder to treat, or someone who is unemployed or uninsured. To ask people for help meant taking help away from someone who needed it more than I did. So I didn’t. And then I quit social media, cutting myself off from the toxic stew of illness influencers, fakers, scammers, narcissists, greedy CEOs (I’m 99.9% sure the CEO of Substack sucks too, but in comparison to Elon and Zuckerberg, I don’t know what’s worse).
My friend Greg and I were diagnosed with cancer just weeks apart, and he leaned heavily on social media for support. We actually met through Twitter, but the friendship solidified offline. Greg was a much kinder and more faithful person than I am, and he was good at social media: funny, thoughtful, and considerate of others. And even so, he was regularly told he should take Ivermectin, should look into Gerson Therapy, every self-appointed quack “cancer expert” and “power of prayer” online warrior bombarding him with advice about how their mother’s cousin’s aunt had great success with coffee enemas or dicey sounding supplements. A GoFundMe paid for his actual treatments, and he believed in the power of actual medicine. But like so many people with cancer, he still died.
And I’m still here, and for whatever life is left to me, for Greg and everyone else’s sake who actually does have cancer, I will spend the rest of it warning people that when you’re diagnosed with cancer, for your mental health, get away from social media. Social media is not your real community. Real community takes time and patience and trust. Sure, you can meet people on social media who become real friends, but honestly, that is rare. And social media is the worst kind of addiction, because your ego starts to depend on it. When I left Twitter and lost 15 thousand followers, it hurt. I regularly feel like the people with stickers and badges on Substack must be better writers than me. When the pressure to post about cancer led to my sharing bald selfies on Instagram, I knew it was time to get off that platform. I was turning into someone no better than Amanda Riley or Belle Gibson. My suffering needed validation from strangers to feel real, and that too is a kind of sickness.
If you must use social media as a cancer patient, keep it limited to people you actually know and trust. And if you must listen to quacks and scammers who think they know how to cure cancer better than a person who spent a decade studying medicine and doing a residency, the only answer you owe those quacks and scammers is “fuck off.”