Personal cancer blogs abound online. They can be heart-wrenching. They can be inspiring. Many offer comfort and hope to others with a diagnosis. Just look at Healthline’s list of the 24 Best Breast Cancer Health Blogs of 2013: Nancy Stordahl explores the theme of loss on Nancy’s Point, ChemoBabe is “edgy and ever-ready for battle,” and Shari Linders shares her problem-solving outlook on “The Best Breast Cancer Ever.”
The instinct to be public about coping with a serious illness will become more common as the generation that grew up with blogging and social media ages, but for most cancer patients, starting a blog is still the exception, not the rule.
Is it generally a good idea for a cancer patient to chronicle their experiences online? The first study to examine this question in a controlled experiment suggests that yes, it is, and that maybe doctors should actually suggest it.
Annette Stanton, a researcher at UCLA’s Jonsson Comprehensive Cancer Center, got the idea for the study when she heard the story of a tech-savvy woman who helped her two sisters–both diagnosed with breast cancer a few years apart–learn to set up a website so they could share their experiences.
Stanton essentially did the same with a group of 44 breast cancer patients. She ran a short workshop teaching them how to use Project Connect Online, a web platform she set up for the purposes of the study, that allowed the women to customize similar sites and control privacy setting to make their updates only as public as they chose (for example, their sites wouldn’t show up in Google search).
After six months, she compared their mental health to a control group of patients who hadn’t created websites. Statistically, the women who wrote had fewer depressive symptoms, better moods, and a higher appreciation for life than those who didn’t, she found–a result that was especially pronounced for women who were undergoing active treatment at the time, she reported in the Journal of Clinical Oncology this month.
Though more nuanced studies are needed, especially on men and for other chronic diseases, Statton imagines that doctors might at least suggest the idea of setting up an online diary, whether on Facebook, WordPress, or any number of existing blogging platforms dedicated to the cancer community.
“It’s really easy to offer it as option,” says Stanton. “Some women, we knew, really didn’t want to share all that on Facebook.” In fact, other research Stanton has done shows that simply writing in a diary also helps cancer patients.
Social media is the elephant in the room when it comes to sharing thoughts on any personal tragedy. On Facebook, many people restrict sharing to happy life events–marriage, birth–so that when a person posts about their depression or illness, it can be awkward for observers. Especially loosely connected ones. Personally, I felt a little voyeuristic reading the detailed Facebook updates from an acquaintance of mine, neither a stranger nor a good friend, who was diagnosed with cancer in her early 30s. There could be other downsides of being totally or even partially public, like being penalized at work for your illness.
But aside from potential catharsis, the experience of the women in Stanton’s study also suggests that a patient experiences other benefits from going public. Maybe she saves the emotional effort of having to explain the details of a latest setback or triumph over and over again, or maybe she gets unexpected help from a neighbor.
There’s no shortage of places to vent on the web. But if you or someone you know has a cancer diagnosis, Stanton named a few sites that are dedicated to patients who want to set up blogs and support communities: MyLifeline.org, CaringBridge.org, CarePages.com. For her part, she plans to conduct a larger test using Project Connect Online.