Harriet Berman, PhD, executive vice president of clinical programs, The Wellness Community – Greater Boston, Newton, MA, explains the pros and cons of cancer patient blogging, as well as what oncologists need to know about the topic.
1 What outlet does blogging provide cancer patients that they never had before?
Harriet Berman, PhD, executive vice president of clinical programs, The Wellness Community — Greater Boston, Newton, MA, explains the pros and cons of cancer patient blogging, as well as what oncologists need to know about the topic.
The act of writing has been shown to be very healing and productive for people who have serious illnesses. One thing you’re doing when authoring a blog is writing, and you are taking your experience, and in a way, putting it outside of yourself so you can feel you have more mastery over it. It becomes something you can manipulate as you write about it, and one of the things about having cancer is this feeling that you’ve lost control.
One thing that’s hard for people when they become ill is that they begin to feel very isolated. They have the label “patient” slapped on them and become passive in the hands of the medical world; at the wellness community where I work, we try to help patients become “patient active” and get heard. Blogging is a chance to have your voice heard and explain to the world what the real experience is. I think there’s the opportunity to communicate about something that is essentially your whole life when there aren’t a lot of people who really either want to or are capable of talking to you about it in person. And it creates a community; bloggers need other bloggers. The public forum is the opportunity for people to say “here’s the reality of what cancer is like. I think you can learn from this. I think it’s important that my voice be heard. By writing about this, I make it less scary for everybody.”
2 What dangers are there to patients who write cancer blogs?
I think the dangers are minimal. Th ey’re the same as any other danger that people face when they go public with anything, just as when they create a Facebook page or when they send an e-mail that they regret the next day. It’s not like people are posting their social security numbers. But in any public forum, you have to be thoughtful about what’s out there, because there could be a danger of a very blatant blog that says something nasty about a doctor, and that doctor could see it and become alienated.
There’s also a danger to other patients who read your blog if you post misinformation, or if you say something like “I would never go to ‘XYZ’ hospital again because all the people there are incompetent.” If other people read that, and that’s the hospital they go to, it may make them wonder about that hospital.
3 What should patients know before reading a patientauthored blog?
Every person’s experience is different, and every cancer is different. If you read things that are alarming or of concern, go to your doctor and say “I read this. Can you help me out?” To some extent, maybe doctors aren’t thrilled with that, because they’re fielding a lot of questions that they wish their patient hadn’t read on a blog or on a support group’s website. But we live in the information age, and that’s something doctors should be becoming used to. The big thing is that what you’re reading on a blog is someone else’s experience; it may resonate with you, but it’s in no way predictive of what you can expect. What patients should look for is what they can learn from the author that will be helpful.
4 What do oncologists need to know about patient-authored cancer blogs?
There are blogging tools that are well organized and passwordprotected that oncologists should be alerting their patients to, like carepages.com, caringbridge.com, and lotsofhelpinghands.com. By giving them these resources and by being familiar with them and others like them, they can know that their patients are blogging in a reasonably safe way.
Know what the resources are for your patients, in your community and online, and value that writing can be a very benefi cial part of their treatment. The Institute of Medicine published a report last year about how important it is to tend to the psychosocial needs of cancer patients and that if you’re not attending to that, you’re not attending to the whole person and the whole disease.
Doctors may not have time to sit with the patient and go over what they’re going to write in their blog, but they do have time to provide a brochure or a list of websites. Also, some patients have never thought about writing, but hearing from a caring nurse who says “I know other patients who found if very helpful” may help them feel hopeful and not so alone. People can never tell their story too many times; every time they do, they gain a little more control over it. There’s something about telling your story that helps people realize “I’m not just a cancer patient; I’m a person who has cancer, and I can tell people about it.”