Finding Community in Surviving Cancer
“Cancer,” Jason Pike wrote in his first blog post last April. “It fucking sucks and it’s hard to explain.”
After realizing that a diagnosis of throat cancer meant surgery would temporarily steal his ability to speak, Pike, a Chicago entrepreneur, turned to blogging as a way to keep friends and family in the loop on his progress.
“As many cancer patients will attest, the act of treatment and recovery is boring as hell,” says the 30-year-old, who blogs at As Yet Unfinished. “There I was, lying in hospital rooms on intense painkillers, sitting in waiting rooms awaiting my daily radiation treatments or lying on my couch watching the same episodes of the same shows over and over. Add to that the sum total of being in pain, scared of dying and unable to speak, and my nature as an expressive artist, and it was shockingly easy for me to keep [the blog] updated.”
Tumblr became a place for Pike to chronicle his personal journey through the “sometimes-gritty, sometimes-triumphant day-to-day movement through disease,” he says. But the real draw turned out to be the unexpected community of cancer patients like him. Once Pike began including tags like “cancer,” “synovial sarcoma,” “cancersucks” and “radiation” on his posts, he attracted other bloggers who read, commented and followed. Friendships formed. Some became solid connections. Like him, many simply wanted to know “they were not alone in such a terrifying, absurd situation,” Pike says.
That’s how he met Mandy Johnston, a California blogger who started writing about her experience with cervical cancer within days of her initial diagnosis. And Julieth, a Colombian blogger who anonymously documents her struggle with kidney cancer.
For Julieth, Tumblr was an emotional release — a safe place to put the sadness, fear, and anxiety, without the fear of being judged by family, friends, or even prospective employers. “I was scared to death, and I needed to put that feeling somewhere,” she says.
But for Johnston, the process was more public. Before her official diagnosis came, she’d gone to several doctors to figure out what was happening with her body. She shared every step of the process with one of her best friends, via Google Talk. Tumblr’s quick pace — a boon when dealing with the day-to-day of cancer treatment — seemed a natural fit.
“Your whole life feels like it’s at a standstill while you wait for a doctor to call, or test results to come in, or the chemo drip to finally stop,” she explains. And so the blog was catharsis. “I’ve always needed to write when my world doesn’t make sense. Otherwise the thoughts just churn and tumble in my brain.”
Initially, she didn’t share the blog, Pappenstance, with anyone other than the friend who’d encouraged her to start. But like Pike, it was the cancer-related tags that led her to others who were blogging their own way through cancer.
“We’re all younger, maybe a bit edgy, often trying to find the bright side of this circumstance we’ve found ourselves in, but by no means being Pollyannas about it,” she says of the tight-knit community.
Pike and Johnston are now finished with treatment, and though they both have their share of follow-up appointments, they’ve been able to maintain their friendship outside of Tumblr — over the Internet, of course, since they live thousands of miles apart.
Blogging about health issues isn’t without its obstacles, of course. And while there are plenty of supporting relationships forged, bloggers describe a surprising number of people who infiltrate communities and fake their diseases, too. Some speculate they have a modern, web-dependent version of Munchausen Syndrome — “Munchausen syndrome by Internet,” it has been unofficially dubbed — using the web to dupe others into sympathy. The most convincing of these fakers will go to extreme lengths: deeply researching their chosen illnesses or even shaving their heads to make it look like they’ve undergone treatment.
“It’s frightening how common this type of thing is in this day and age,” says Taryn Harper Wright, who runs the Warrior Eli Hoax Group, a blog that works to expose these people. The blog is named for an elaborate hoax perpetrated by a 22-year-old med student who invented a fictitious family dealing with tragedy and illness and set up numerous fake social media profiles to draw people in.
“I think at this point I’ve outed about 13 fakers,” says Wright, who started the blog last Mother’s Day and advised bloggers to trust their instincts when making connections with fellow cancer patients online. “Be a discerning consumer and don’t ever feel bad for questioning a story.”
While it’s difficult to understand what might motivate someone to fake a cancer diagnosis, Pike is quick to offer compassion.
“These people, at the bottom of everything, are human and deserve help, the same way that true cancer patients do,” he says. “Cancer taught me all kinds of clichéd things, but foremost among them is empathy.”
And therein lies the strength of the cancer blogging community: empathy, honesty, and genuine human interaction.
“Tumblr fosters catharsis. People blog because they want their voices to be heard — so let them know you’re listening.”
Illustration by Dominic Butchello/Tumblr
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