When I was diagnosed with testicular cancer, social media became a way to control my own cancer narrative, with honesty and humor.
Everything in your life changes the moment you learn you have cancer. Besides the challenge of, you know, staying alive, there are difficult decisions about how much to share: Do you go dark on social media and focus on taking care of yourself? Or do you return to life's regular programming, already in progress? When I got cancer, I decided to keep 'gramming. If social media is about sharing your life, then I wanted to share my cancerous life too.
To be clear, cancer is not fun. It's not glamorous. In an instant, you go from living a regular life to one full of expensive drugs, inspirational pamphlets, and hyperbole ("You're a fighter. You're a survivor"). It's like an alternate reality, and it's incredibly difficult to explain to people who haven't lived through it.
I was diagnosed with testicular cancer in 2012, and very quickly, talking to people about it became awkward. For reasons I cannot explain, a lot of people wanted to tell me about the person they knew who had cancer... and died. To avoid these kinds of interactions, I started to retreat, only allowing certain people to see me in real life. But I kept posting—on Instagram, Twitter, and Facebook—where I could share how I was feeling on my own terms, in my own words, without the need for any explanation.
There, I connected with people like Annie Goodman, another 20-something who was battling brain cancer. Even though I lived in Los Angeles and she in New York City, we struck up an easy friendship, moving from Twitter to email to text effortlessly. Talking to her made more sense than talking to anyone in real life, because unlike anyone in my immediate social circle, she understood what I was going through.
Other young cancer patients have had similar experiences. "Some of my best friends are fellow cancer patients that I met through Twitter, Facebook, and Instagram alike," said Suleika Jaouad, a writer based in New York City who was diagnosed with myelodysplastic syndrome and acute myeloid leukemia in May 2012, at the age of 22. "I don't think everyone needs to blog or post pictures about their illness, but I do think social media can be a wonderful way to connect with a community and to feel less isolated."
In the friendships I made online, I was able to talk about the areas of cancer people don't often think about—like sex, post-traumatic stress disorder, and the loss of teeth (yes, chemo fucks up your teeth). I needed more than buzzwords and touchy feely walk-a-thons. By sharing my experience online, I found others who felt similarly.
"I immediately posted on Facebook and Twitter: 'I have cancer. Who wants to FUUUUCK?'" — Erik Bergstrom
Plus, social media gave us an outlet to be funny. In one of her posts, Goodman captioned a photo: "Don't worry, it's not Ebola."
After Erik Bergstrom, a 33-year-old comedian and cartoonist based in New York City, was diagnosed with stage 4 Hodgkin lymphoma, he turned to social media. "I waited until a biopsy was analyzed showing it was 100 percent cancer," he said. "Once I knew that, I didn't hesitate a second [to share on social media]. I immediately posted on Facebook and Twitter: 'I have cancer. Who wants to FUUUUCK?' I use social media frequently and mostly for jokes, so it seemed like the right thing to do."
Throughout his illness, Bergstrom regularly posted on social media. He said the visuals helped his friends, who were young and healthy, understand what he was going through—that "people could read that I had cancer, but I think an actual image of me in the chemo chair makes people actually think 'Oh shit, this is really happening.'"
Lacey Henderson, a 26-year-old Paralympics long jumper who lost her leg to synovial sarcoma, said she thinks "people identify deeper and more quickly by photos." Posting photos online becomes a way to explain something that's so difficult to understand, and to reclaim your own narrative.
"I didn't post anything publicly about my cancer until I was two months into treatment and bald," said Kelsey Morris, 25, who was diagnosed with osteosarcoma. "Eventually, I started to feel inauthentic in things that I was posting because it started to feel as though I was leaving out such a huge part of my day-to-day life."
As my treatment progressed, and I grew weaker, I came to need the support from the strange little internet community liking my posts. Besides Goodman, I began corresponding with people from all over, some who had gone through similar things, others who watched their friends and family go through it. Cancer has a way of breaking down barriers between people, bringing people together in a way that normally would never happen.
After I finished chemo, I visited New York City and met Goodman in person. We talked everything: dating with cancer, working with cancer, living with cancer, Instagramming with cancer. It was a digital connection that buffered into a lovely human connection. The power of social media created our friendship, and it keeps some people alive longer—in some ways, forever.
Less than a year after I met Goodman, she died. In some of her final days, she was still Instagramming, and up until the end, she kept it real, honest, even funny. By choosing to share her life online, Goodman left behind an incredible history of her reality with cancer: She lived with humor, light, and honesty, and her social media is a testament to that life. Because of the internet, she lives on—her own way of surviving.
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