The Slice of Internet Where Cancer Patients Control Their Lives & Share Their Joy

But "survivorship bias" often sneaks into how viewers perceive these stories, as Amanda Montell writes in her new book, The Age of Magical Overthinking.

The Slice of Internet Where Cancer Patients Control Their Lives & Share Their Joy

In her new book, The Age of Magical Overthinking: Notes on Modern Irrationality, Amanda Montell embarks on a journey to explain the cognitive biases that warp our very-online brains. From attributing the appeal of conspiratorial wellness influencers to proportionality bias to debunking the “zero sum bias” that prompts the debilitating comparisons we make on social media, Montell puts words (and real psychological concepts) to some of the most persistent angsts of the 2020s. In the excerpt below, from her chapter “What It’s Like To Die Online,” Montell writes about cancer YouTubers who share their experiences—from diagnosis to, sometimes, death—and how documenting the randomness of life’s crappiness challenges society’s survivorship bias.

Of the six dying girls I interviewed, only one besides Racheli survived. Her name was Mary. She was diagnosed with Ewing’s sarcoma, a childhood bone cancer, at age 15. I still keep up with Mary on Instagram, and it’s by far my most positive use of the app. My heart climbs to my throat every time I see her reach any life milestone, big or small: high school graduation, college acceptance, a new hair color. Her hair came back like an avalanche. When I interviewed Mary in 2017, she had recently finished her last of 14 chemo rounds. Fuzz had begun returning to her scalp in tawny patches, like continents on a milky globe. Mary was still a minor when she went through treatment, so the decisions about her health weren’t entirely up to her. Filming and editing YouTube videos—“A Week with a Cancer Patient | hospital vlog,” “Best & Worst Parts of Having Cancer”—became a pleasurable way of gaining some agency. And the sense of routine helped pass those long, boring hospital stays. “When I got sick I was really lonely and didn’t have a lot of ways to reach out to people,” Mary explained. “YouTube was therapeutic. Even though there were so many terrible things happening, I could make the terrible things into a video, into art. I could share it with people in my own way. That helped me cope.” Almost every day, viewers left comments that Mary’s videos put their problems into perspective: breakups, bad report cards.

The dying girls’ “imperfect” vlogs made use of YouTube as a virtual gallery space, challenging survivorship bias like physical art never could. Their raw, self-authored sketches of day-to-day illness were digital artifacts—a collection of amateur pottery and fabric that can’t disintegrate with age. 

These young women’s videos also questioned the fantasy portrayals of cancer preferred by the news, which only inflame viewers’ survivorship bias. “Inspiration porn” defines a whole media genre where folks with severe health impairments are depicted trouncing obstacles with sheer will. Most Americans with disabilities are not sufficiently employed or supported, no matter how resolute they are. A 2015 study published in the Disability and Health Journal concluded that individuals with physical disabilities are 75 percent less likely to have their medical needs met than their able-bodied peers. “People with disabilities have largely been unrecognized as a population for public health attention,” concluded another 2015 study from the American Journal of Public Health. The findings showed that adults with congenital defects, late-onset illness, or injuries were almost three times as likely to be unemployed and more than twice as likely to have a household income of less than $15,000. Most terminal cancer patients don’t make “miraculous” recoveries thanks to their swell attitudes. Most dying girls don’t become YouTube famous. 

When my mother got sick and the dialect of cancer entered my lexicon, I was struck by how naturally people slipped into the language of success and failure to describe life and death. “Losing” one’s “battle” with cancer was a chosen forfeiture; it was “giving up,” “surrendering.” Implicitly, the lesson was to hoard life like gold, and those who “win” it must have deserved it. 

Photo: Kaitlyn Mikayla

At its roots, survivorship bias is like proportionality bias in that it’s powered by a fundamental misunderstanding of cause and effect. Similar to the misjudgments that inspire conspiracy theories, survivorship bias encourages thinkers to read positive causation into patterns where only correlation exists. When Racheli’s YouTube commenters saw the heartening twinkle in her eye, survivorship bias convinced them a sunshiny mindset was surely what saved her. This craving to transform senseless misfortune into a logical narrative was part of what motivated Racheli, Sophia, Mary, and Claire to launch their YouTube channels to begin with. Amid the whirlpool of reactions that comes with a grave medical diagnosis is the agony that your life is happening at random, and there’s nothing you can do about it. The first time we spoke, Racheli said that the ability to upload YouTube videos and impact her subscribers for the better made the experience feel less meaningless. 

“It helped me feel like the hard times were counting for something,” she said, “that they weren’t just happening for no reason.” 

We often want real human lives to feel like well-plotted films. We desire obstacles and drama and, ultimately, an ending that blooms from the bulbs planted. Life is not a screenplay, but YouTube falls somewhere in between. Video blogs blur the lines between real experience and storytelling, celebrity and sick teenager, audience and friend. When events do not unfold in a fashion that “tracks,” some viewers get agitated and lash out. The majority of the feedback Racheli, Mary, Sophia, and Claire received on their videos was supportive, but it was hard not to zoom in on the sparse hostility. Even those facing the unthinkable, who’ve been forced to rise above the “small stuff,” are not immune to the distress of internet malice. Fifteen-year-old Sophia Gall said she got a few comments accusing her of faking her illness and demanding that she be thrown in jail. “I wish that were the truth,” she laughed dolefully. 

In her forties, Raigda Jeha was part of a smaller faction of Gen X vloggers who didn’t grow up with screens. In contrast to Mary’s highly curated short films and Racheli’s action-packed vlogs, Raigda’s videos were typically shot in one take. Seated, her phone held selfie-style, she chatted familiarly about what foods and treatments had been agreeing with her lately. She advised viewers to take an active role in their own care, a palliative approach, encouraging them to weigh their doctors’ advice against their own happiness. After posting her first video, Raigda remembered a guy asking why she even bothered putting on makeup if she was dying. “And then you get the trolls saying, ‘I have a cure! Buy this!’ ” she described. “Or people getting upset with me for pushing alternative medicine, which I’m not. There is no cure for me. I’m just sharing my life while I still have it.” 

In service of balanced expectations, quantitative studies have noted a correlation between optimism and good health. A hopeful disposition is connected to lower levels of depression in depressive patients, decreased risk for heart attack and stroke, and generally longer lifespans. When you begin a new workout routine and proceed to focus solely on its benefits, that technically may be a biased interpretation of results; however, a 2019 study found that participants with the highest levels of “irrational” optimism lived 11 percent to 15 percent longer than those who had no positive thinking practice. 

Hope can only aid a body so much, of course. As Siddhartha Mukherjee, author of The Emperor of All Maladies, once put it, “In a spiritual sense, a positive attitude may help you get through chemotherapy and surgery and radiation and what have you. But a positive mental attitude does not cure cancer—any more than a negative mental attitude causes cancer.” For Talia, Raigda, Sophia, and Claire, a blithe temperament did not “earn” them recovery. And yet, short as their lives were, I was in awe of how they enjoyed them. Shouldn’t pleasure alone count as “success,” even if it can’t be measured the same way?

Copyright © 2024 by Amanda Montell. Adapted from THE AGE OF MAGICAL OVERTHINKING: Notes on Modern Irrationality by Amanda Montell. Reprinted by permission of One Signal Publishers, a Division of Simon & Schuster, Inc.

Inline Feedbacks
View all comments
Share Tweet Submit Pin