By Deanna Thompson, guest blogger
Sites like CaringBridge can be effective mediators of grace to those of us diagnosed with a serious illness or suffering the effects of a life-threatening accident (see previous post for more on that). While the potential benefits of using such sites are many, it is nevertheless the case that publicly narrating an illness for a virtual audience can present challenges, especially for those less familiar with the world of social media. Amidst the benefits of using online communication to keep loved ones informed of your condition, you might encounter a few difficulties along the way: 5. Even though CaringBridge is not just another social networking site, it can be mistaken for one.
When the condition of the person suffering from the illness or accident is updated frequently on CaringBridge, family and friends often make a habit of checking the site regularly. It becomes part of the routine: check email, Facebook, CaringBridge. While having others up-to-date on the latest medical development is one benefit of using such sites, it can also be unnerving to have attempts at chronicling grief and pain discussed and framed in social networking terms: “I just love your CaringBridge site!” “You should post more photos!” “You should change the wallpaper on your site—you have a Fall background and now it’s spring!” Because it operates like other social networking sites, people who use it are often tempted to think of it in these terms. To others of us, though, it’s a tool we wish we didn’t have to use to keep others in our lives up-to-date on how we’re doing with stage IV cancer or other life-altering conditions. 4. Not everyone in your life reads CaringBridge.
It is the case that for most of us using CaringBridge, readership of our sites reaches more people than we could have imagined before we were sick or hurt. Developing a sizable readership on CaringBridge, however, can also nurture the illusion that everyone in our lives reads our updates. That’s simply not the case. Some people close to me never read CaringBridge; a few have told me that they’ve followed other CaringBridge stories in the past and no longer have the energy to follow more. Negotiating the highly public nature of having your story followed by hundreds with those in your life who know nothing of you latest posts adds an extra dimension to the challenge of talking cancer while having cancer. 3. Sometimes there’s pressure to post when you’re out of words.
Talking about a new, unwanted life with cancer or life-altering injury takes courage, skill, and energy, which aren’t always available when grief, pain, and depression become regular companions. Writing updates on CaringBridge can be a helpful exercise in finding words to communicate how you’re coping with your new life. At the same time, there are moments of walking this path when words prove elusive, out of reach. Surgery, treatment, or the psychological impact of a serious diagnosis can bring on periods of drought at the well of words. And when words refuse to come, updates don’t get posted on CaringBridge, and people start to ask why. But when words are scarce, having to explain why there aren’t more words, more updates, often serves to heighten the sadness and frustration at the absence of words. 2. There are no clear guidelines for how to stop updating gracefully.
Thankfully many people with CaringBridge sites do get better, even if temporarily. When the person’s life hangs in the balance and the future is uncertain, regular updates on Caring Bridge make good sense. What happens to the CaringBridge site, though, when you’re walking the long walk with a diagnosis? As with other social networking sites, both the ones posting and the ones reading can grow attached to this mode of communication. So when there’s nothing new to report, sometimes for months at a time, easing up on this communication can be difficult. It took me awhile before I learned to be clear in my posts that I wouldn’t be sending another update for two or three months. This helped me and my readers know that I’m doing well enough to take a break from CaringBridge, but since my diagnosis has no cure, I also plan to maintain a relationship with my readers for the long haul. 1. Both the public nature and popularity of CaringBridge encourages comparison about who handles their illness or accident most gracefully.
Before there were virtual ways of sharing stories of illness and injury, comparisons were made over how some deal with being really sick or injured courageously while others deal with it poorly. With the advent of sites like CaringBridge, we now have another potential way to compare. Of course it can be helpful for those of us who are really sick to hear about strategies for coping used by others who are really sick. At the same time, comparing and contrasting how two different people use CaringBridge can often lead to praising one approach and criticizing the other. It’s important that those suffering from life-threatening conditions know that sites like CaringBridge exist, as well as hear about their potential to communicate support. But at the end of the day there is no roadmap for how to live with cancer, or journey on with a debilitating injury, and we can work to be mediators of grace even when there’s no Caring Bridge site to help us do so.
Deanna Thompson is professor of religion at Hamline University in St. Paul, Minnesota. Her most recent book is Hoping for More: Having Cancer, Talking Faith, and Accepting Grace, a theo-memoir on living with stage IV cancer. This post is reprinted with permission from her Grace Blog, which can be found at www.hopingformore.com or www.facebook.com/DeannaAThompson. (Photo by Liz Banfield.) The New Media Project is a research project helping religious leaders become theologically savvy about technology. To request permission to repost this content, please contact firstname.lastname@example.org.