Professor Janet Kwami has made a career in communications, even teaching blogging to Furman University students. Yet she chose a more private path when she was pregnant with her second child and had received a diagnosis of stage 3 breast cancer.
“I haven’t kept a blog. I never did CaringBridge,” Kwami says. “I’m from Ghana, West Africa, and, in my culture, illness is private.”
There’s a basic personality difference between people who are driven to share their experiences and those who keep it private, notes Linda Renner, a licensed independent social worker and counselor at the Cancer Society of Greenville County.
“People who are extroverted are more likely to reach out through social media for energy and support,” Renner says. “Cancer drains people tremendously, and the social connection is one way to help sustain themselves.”
There also is a generational difference between cancer patients who blog and those who don’t. Although older people increasingly are using social media platforms to connect with family and friends, they might not be comfortable sharing their treatments with strangers, she says.
“Among older folks, there’s the thought that you don’t talk about bad things, while younger folks will open up about what’s going on with them,” Renner says.
During her four years of fighting breast cancer, Kwami has noted social media’s positive impact on other people dealing with illness and grief. She says she understands the draw of describing the raw, daily details of one’s struggles: “The instant feedback is awesome.”
A person with cancer or another serious illness might feel a pull to share the experience with others, but for some people this can be fatiguing, she says.
“The fear of blogging is that I don’t want it to consume me,” Kwami says. “I’m more reflective in my writing; I want to think through everything before I put it out there, while some people are more instantaneous.”
An online scrapbook
Social media can also serve as a central and readily accessible store of memories, scrapbooks and messages. For instance, Erin Hinson began a blog, “Two Possums and a Bug,” when her baby was diagnosed with cancer. But over the years it began to serve more of a scrapbooking function, “something for myself, to look back in one place and see what was going on six or five years ago.”
Dr. Jay Motley, whose wife, Lindsey Motley, died in February from colon cancer, also has found that social media creates a permanent record of his family’s life together.
“CaringBridge has a way to create a book from all the posts Lindsey wrote, and I’m going to work on that,” Motley says.
Also, Motley learned that whenever he wants to find a photo they posted during her three-year cancer journey, he can type in the hashtags they commonly used, and all postings appear.
Hinson admits to feeling a little sheepish about sharing certain things, and other times she wonders if she is being too private.
“But I keep getting feedback from people whom I trust and care about that it’s perceived more as a sharing of an experience and not a look-at-me kind of thing,” she says. “This is why I like Instagram; you can capture so much of it in a photograph without words or explanation.”
A technical editor by profession, Hinson has mastered words. In a Feb. 24, 2012, blog after her baby, Mary Hazel, had entered remission from cancer, Hinson wrote, “I really love that baby. Like really. A lot. I think about the bullet we dodged every minute of every day. Even when I’m doing other things, like laundry, I’m aware of the relief that inhabits that very particular part of my brain. It’s like a blanket that’s just the right weight. It’s there even when I forget it’s there.”
Hinson also celebrated Lent that year with 40 days of blogs on the topic of “Project Kindness.” Her goal was to do a kind act for a stranger each day.
A teenage girl responded to her posts, sharing that she had decided to emulate it with her own “Project Smile” project. “So I laid out my calendar and wrote something on every day that would bring a smile to someone’s face, and I would send a text out every morning telling about that ‘task,’” Madison, age 15, wrote in the blog’s comments.
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After death: To keep Facebook profile or not?
Privacy also is an issue for social media users who have died. Do their families retain their photos and writings?
“Facebook will turn Lindsey’s page into a memorial page, and I want to see what that means,” Motley says.
Erin Hinson’s husband, Russell, died March 12 from a lifelong, debilitating condition, and she allowed his Facebook page to continue. In little over a month since he died, his Facebook page was visited around 2,000 times. People posted more than 40 photos and condolences and memories of Russell, and comments approached 200.
Some people who posted spoke directly to Russell: “You struggled your whole life with that which took you, but I can never remember a complaint. You were honest about your pain, frustration, and very real struggles but never complained. What a lesson!” wrote one woman.
Direct social media monologues to a deceased person might not come naturally to people who reached adulthood before the Internet.
But they are a quite natural part of today’s society, says Joseph P. Mazer, director of the Social Media Listening Center at Clemson University.
“Social media platforms allow visitors and users to leave messages of condolences, memories, and even messages directly to the deceased person,” Mazer says. “We call these messages ‘transcorporeal communication,’ which is a communication that occurs when a living person sends a digital message to a deceased person through a website or social media.”
For Erin Hinson, social media gave her a way to share her wedding anniversary with her late husband. She posted a photo of their wedding day kiss on his Facebook page and wrote, “Thirteen years ago. That was a good day!”