Is blogging and tweeting about cancer a good idea?
When a person is diagnosed with cancer, making meaning out of life and developing a broader social support structure can be powerful tools for coping. That was certainly the case for blogger Lisa Boncheck Adams, who lost her eight-year battle with breast cancer on Friday, March 6. Her blog was a place of refuge for her to chronicle her journey and to share support and advice for others.
"I was writing about the darker, richer emotions I was feeling -- aimlessness, fear, despair -- but also the dogged commitment to always be strong with an enthusiasm for life," Adams wrote in her last blog post.
Adams, a mother of three from Connecticut, was first diagnosed in 2006 when she was just 37 years old. She learned that her cancer had metastasized in 2012. For many who followed her struggle, the loss felt very personal.
Social media offers people who have been diagnosed with cancer or other serious illnesses a platform to speak about their journey, which can help to build a supportive community. But it also opens these people up to public scrutiny in sometimes difficult ways.
Studies have suggested that emotional writing like Adams' may have a therapeutic effect for those struggling with chronic illness. And social support has been found to act as a protective factor against stress, which can take a psychological and physical toll.
Social support typically means the comfort of friends and family's physical presence, but when a person is spending time in isolation due to an illness that support could also come from friends online.
For those whose illness prevents them from in-person gatherings and support groups, Alyson Moadel-Robblee, Ph.D., director of the psychosocial oncology program at Montefiore Einstein Center for Cancer Care in New York, says sharing the journey online may be the best option. "The social media community is a support group in a way. You know you're not alone," she told CBS News.
Throughout her public battle, Adams posted 176,000 tweets and attracted more than 15,000 Twitter followers. In honor of her legacy, a breast cancer group hosted a Twitter chat Monday night.
Some of her many followers shared their sadness about her death and wrote their own blog posts about what her life meant to them.
Moadel-Robblee says that taking a personal cancer battle public online can be cathartic for some, but danger lies in opening yourself up to negative comments from the general public or the media.
"You leave yourself open to a world of people who will have a whole host of responses; it's not like an in-person support group where you have a counselor who's helping people process this experience together," she said.
Adams' extremely public sharing of her journey made her especially vulnerable to negative feedback. In a much-discussed column for The Guardian newspaper last year, Emma Keller suggested Adams was over-sharing with her many tweets.
"The ethical questions abound," Keller wrote. "I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies?"
One of Adams' online supporters, blogger Zeynep Tufekci responded to Keller's column in defense of Adams' use of social media:
"Social media is not a snapshot that can be understood in one moment, or through back-scrolling. It's a lively conversation, a community, an interaction with implicit and explicit conversations and channels of signaling, communication and impression."
One of Adams' tweets showcases the pain a person feels while in treatment and shares the gratitude she feels for the support of her online community.
"Ultimately, in sharing the journey online, I think the positive outweighs the negative because people rally around those who share in an honest and courageous way," says Moadel-Robblee.
"To see someone living their life in the face of death is a gift, and for the community to see that she gave something to this world of value is inspiring," she concludes.