We share many aspects of our lives online, and illness is no exception.
According to a 2011 report by the Pew Research Center’s Internet & American Life Project, of the 74% of American adults using the Internet, 34% have read someone else’s commentary or experience about health or medical issues on an online news group, website or blog. Meanwhile, about 13% of patients blog about their diagnosis or experience.
Many Options for Blogging
Blogging, while hardly a new idea, is one making its way further into mainstream medicine. Increasingly, health care systems recognize the power of blogging to help patients — and their caregivers — reduce feelings of isolation and anxiety, share treatment updates with friends and loved ones and engage more actively in their own care.
Many top-tier medical institutions, including University of California-Los Angeles, Johns Hopkins and Massachusetts General Hospital, are encouraging patients to blog about their experience with illness by partnering with companies such as CarePages and Caring Bridge, services that provide private websites on which patients and caregivers can share health updates with friends and families.
Blogging provides an easy forum for patients and caregivers to accomplish a number of things. First, it offers a forum by which patients can keep their friends and family informed of their condition without the need to repeat their story by phone or email multiple times. “People know to go there, and the conversations and the burden of letting people know what’s going on is lifted,” Sona Mehring, founder and CEO of Caring Bridge, said. “You don’t want to make all those calls and emails.”
There’s also the community support. Friends and loved ones can log on and leave messages. In addition, patients can see a tally of page views indicating how many people have visited their site and read their updates, which itself has a supportive effect. “That is very impactful,” Mehring said.
Blogging capabilities are also made available through medical social networking sites known for their disease-specific communities. On Inspire, for example, patients can participate in communities of people with the same illness, but, if interested, they can also start their own blog. Blogging offers people something different than engaging in online discussions, according to Brian Loew, Inspire’s CEO.
“A blog is about you and the topic you want to discuss. There’s a catharsis. The actual act of writing is therapeutic,” he said.
Inspire also partners with Stanford Medicine to provide patient authors for its online publication, Scope, where those affected by serious and rare diseases share their unique stories.
Georgetown Lombardi Comprehensive Cancer Center is one of a number of institutions offering writing workshops to help patients cope with illness. One of the main benefits — according to Nancy Morgan, director of the center’s arts and humanities program — is the opportunity of writing and sharing one’s thoughts through the written word to bridge a connection at a time when people often feel very isolated. “It’s really important with cancer because people often feel like they’ve left the planet,” she said.
Different Motivations for Blogging
Many patient blogs chronicle the emotional ups and downs of illness and its treatment. For others like Maggie Heim, who was diagnosed with ovarian cancer in December 2009, a more practical approach brings a sense of purpose. In her blog, “Help Keep a Sister Alive,” Heim wishes to provide others with information they can use to get the treatment or benefits they need. “I actually got into it to try and get people interested in the drug shortage issue, because it was dramatically affecting ovarian cancer patients,” she said.
Although the topics she writes about vary, Heim said her main goal in writing the blog is to create a space where people can gain links to community resources, understand when they qualify for Social Security benefits, and learn how to navigate Medicare and Medicaid, among other things. “Where do you find community services that can help you fill out these forms? Where can you go to get community mental health services?,” Heim asked as examples. Answers to those types of questions are what Heim, who works as a corporate lawyer, would most like to provide her readers.
“When you’re told you have a disease [and] that there’s a 75% chance you’re going to die in five years, you feel like, ‘maybe I should be doing something.’ I’ve been doing this job as a lawyer for so many years and I’ve supported my family, but have I ever done anything that really helped anybody? And I think that motivates other people and, obviously, me too. I just felt like I had to do something,” she said.
“We see that a lot,” Loew said of patients and caregivers creating blogs as a way of being useful, rather than emotionally expressive. He points to an Inspire member whose husband died of lung cancer. After her husband’s death, she continued to write the blog. “She would scan scientific research and post things she thought were interesting. No one asked her to do this, and I think even after her husband died she wanted to help other people. I feel like that’s a real motivation,” he said.
The Effects of Writing
The benefits of blogging or writing about one’s illness are numerous, and depend, of course, on what the writer is seeking.
Morgan points to research she and her colleagues conducted at Lombardi in which people waiting to see their doctor were given a 20-minute writing task. They were then given a post-writing assessment and a follow-up after three weeks.
The researchers found that immediately following the writing task, about half of the participants reported changes in their thoughts about their illness, and that those thoughts were “significantly associated with better physical quality of life at follow-up,” according to the study. More than half — nearly 54% — reported positive changes in their thoughts at the three-week follow-up.
Getting one’s feelings and thoughts down on paper or posted online also seems to have a mentally organizing effect. Often, Morgan said, the writing helps patients to clear their minds, and to create a script. “You can organize your thoughts and tell your doctor, ‘This is what I need.’ The writing helps them make sense of it or figure out what they want to say to their family,” she said.
There’s also research to support the health-enhancing effect of writing.
For example, James Pennebaker — a University of Texas-Austin psychologist and researcher — has found that people writing about emotional upheavals often experience better health, including a stronger immune system.
“The relief one feels when they finally say or write something has a physiological explanation,” according to Morgan. An individual’s heart rate, blood pressure, sleep quality and other physical measures often improve.
There’s a growing recognition of the effect writing can have on patients’ recovery and overall well-being, as well as how they interact with their health care providers.
“It is almost something that needs to be prescribed,” Mehring said of patient blogging. It’s proven itself to be a highly accessible, low-cost method of helping people cope with their illness. According to Mehring, “It needs to be part of the care plan.”