Why do patients blog? Why do they reveal personal information and medical experiences on the Internet?
1) To Share Information
Annette McKinnon, author of ‘Here’s Your Gold Watch, Rheutired,’ started her blog “to inform people about things I learned that seem obvious to me now, but were hard to learn.” Carolyn Thomas, author of “My Heart Sisters” agrees, “I started just to share what I’d learned at Mayo Clinic about women’s heart disease.”
Patients blogs are vehicles for patients to learn about options for their condition and to understand side effects, according to AutoImmuneGal, who writes for a blog by that name. “I blog to share experiences with the medical system and autoimmune disease and I hope it is useful to others. Readers share ideas and a beneficial dialogue emerges.”
As Patti Koblewski describes it, patients blogs are a type of interpersonal GPS, “a central location to help guide others on their journey” with information and resources. “If it can reach one person and help them through a tough time, it’s worth it!” she believes.
2) Journaling
One of the best parts of blogging is getting your experiences and thoughts out on paper, or in this case the blogosphere. Annette keeps writing “because it is a fulfilling and a creative outlet.” As a nurse, Andrew Lopez believes that blogging is a cathartic, self-reflective process, much like journaling. “These days, a blog can reach a whole lotta people with the right message, content and people supporting it.”
3) To Provide Support
Those with metastatic disease, especially metastatic breast cancer, do not have many support opportunities. As Donna Peach author of Dancing through Life’s Adventure with Breast Cancer explained, “Often doors for support have closed on people because of fear…People who attend breast cancer support groups are often those who think their cancer won’t return; we with Metastatic Breast Cancer are, I guess, a wakeup that it can return…Dealing with MBC is overwhelming. I present an open door,” in other words, a supportive community.
As Patti relates, “It is very hard for patients to maintain a positive attitude when dealing with chronic conditions; other patients help give hope.”
4) A Bridge Between Health Care Providers and Patients
Being educated before walking into the doctor’s office is important, says Autoimmunegal, because appointment time frames are often limited. This is why so many bloggers feel that they are acting as a bridge between health care providers and patients.
Anne Marie Cicarella, author of Chemobrain…in the fog, hopes that she is providing a bridge. “I want to know people are asking the right questions of their doctors.”
For Carolyn, writing about the psychosocial impact of surviving heart attack , is filling in a gap. “Women aren’t hearing it from doctors.” Katherine K Leon, who writes A Dose of Reality and contributes to The SCAD Alliance agrees. She believes she and her fellow patient bloggers are providing a form of health literacy education.
As a physician and a patient, Dr. Brian Stork shares his story to help others.
5) A View of Reality: Living With a Disease
Having “been there” gives what these patient bloggers write legitimacy. They provide a different perspective on treatment. AnneMarie explains, “No one gets it like someone who’s already been there. “ Patti states, “It means so much more when hear it from patient who has been through it!”
Donna described in detail changes that were occurring, “Yesterday I resorted to ice under the arms plus Tylenol to decrease my temperature when it rose over 103 degrees.” Or, “The last few months have had a frightening effect on my overall positive attitude. Too much news about my cancer’s progression, sad eyes from those delivering the news and the recognition that my cancer has changed from a slow-growing type to a more aggressive type have all taken a toll while being in the hospital and at home with many crises”.
Donna “wanted to provide a place for others to know someone” who had metastatic breast cancer “personally.” “People with catastrophic disease need safe places and information; there’s lots of bad information on the World Wide Web along with good. My blog helps with good information.”
6) Being a Patient Advocate and Activist
There are levels of activism and advocacy that patient bloggers seek. Inspiring patients to activism, if only with their own physicians is Katherine’s wish.
AnneMarie puts it this way, “There are two parts to my own blogging: providing a shoulder and being a big mouth about things that must change. To me, these are both equally important.”
7) To Enhance Communication with Health care providers
Many patient bloggers want their message to be read by physicians, nurses and other healthcare providers. In fact, some are actively engaged in promoting to them.
Yet Lori Marx-Rubiner who writes at Regrounding, isn’t actively promoting her blog: she just “ want[s] doctors to read A BLOG…I don’t care if my doctors read me.”
As Donna stated, “I want my blog to encourage dialogue between patient and physician with mutual respect. If that is lacking, no amount of information will heal that communication. “
What you do think?
Do you agree with AnneMarie when she says, “The era of patient driven EVERYTHING has arrived. From research benches to bedside, we belong at those tables.”? Do you read patients blogs?
Summary of an #HCHLITSS tweet chat conducted February 7, 2013.
Do I read patients’ blogs? Yes and no. Quite frankly, it depends on my own health status in the moment. I consciously balance my need for information and support v. my need for self- preserving denial. But, that’s just me. (Note: I’m 28 yrs past diagnosis with fibromyalgia.)
In general, I think patients’ blogs are essential and valuable for all the reasons you’ve listed, but especially #2. Also, blogs provide a long-form format that neither Twitter nor Facebook provide, as well as a much-needed corrective/work-around to the protracted and sometimes suspect peer review process for medical journals.
Thank you for commenting Meredith! I appreciate your addition to this discussion.
I have been reading doctor, patient and hospital blogs for the last 10 years. That has included the memorable experience of hearing what surgery felt and looked like to a surgeon, practicing medicine in countries with very different systems to ours and so many patients with their varied outlooks and solutions.
Reading blogs is an education in itself. Almost every one of them is a story in its own right. It’s a pleasure to hear the true unfiltered voices of people from around the world.
I agree with you Annette. Everyone has a story to share and there are fantastic writers in the blogosphere…I appreciate you and your support.
Hi Kathleen and thanks so much for mentioning and including a link to my HEART SISTERS blog! A nice surprise to be included in such an impressive list of well-known patient-bloggers.
Yes, I do read patient blogs – but I should preface that with the proviso that I’m pretty selective: I look for quality writing first (I’m an old PR veteran so am sadly obsessive about the correct usage of things like “you’re” and “your”, for example!)
My appreciation for quality writing often steers me to patient (and physician) blogs that have nothing at all to do with my own focus on women’s heart disease. I follow a number of breast cancer bloggers, for example, because I love reading smart writing about a wide variety of patient concerns that we share in common (doctor-patient communication, loss, fear, etc). Similarly, a number of non-heart patients follow my blog, frequently leave astute comments, and re-post my blog essays on theirs. It’s a wonderful symbiotic relationship that reminds each of us: “You’re not alone out there!”
Many thanks for this overview, Kathleen!
regards,
C.
Carolyn! Grammar/Spelling/Syntax Sister! Good to know I’m not the only one who ditches out of reading poorly written blogs. I, too, am an “old PR veteran” and shake my head with dismay for what passes as news these days. I’m turning into quite the GetOffMyLawn type. How did this happen?
Oh, it’s a curse, alright… I’m going to join you on that GetOffMyLawn team any minute now. Is there a membership fee?
The flip side of this Grammar Nazi compulsion is that when I do find something exquisitely written on somebody’s blog post, my heart sings and I want to share it with everybody I know! It seems to be that winning combination of valuable content AND mastery of Strunk & White’s “Elements of Style” that really moves me! Thanks Meredith! 😉
You are so welcome. Thank you for participating in the #HCHLITSS tweet chat that this post is based on.
Just a different perspective on the “poorly written blog” that is important to remember that many patients have cognitive deficits alongside their particular disease or disorder, and in some cases their cognitive deficits can be a defining aspect of their presentation. I appreciate a well written post but I also know that a feature of my disorder is a lack of cerebral perfusion. On a bad day the simple act of writing at all is an achievement. ‘Creative’ grammar doesn’t necessarily take away from the relatability of the piece. In some ways it increases the familiarity of the situation. An added realism to the difficulties faced by patients. i know I’ve blogged for five years and my writing reflects the level of cognitive difficulties I’ve experienced as my overall health has waxed and waned. Like mental health issues many people are reluctant to admit to the cognitive implications of illness. Just something to keep in the back of all our minds when critiquing less well polished blogs.
Very interesting post. I believe we blog for information and to share it.
1 and 2 are my biggest motivators! Also, I think this was hinted at but not explicitly stated: I feel less alone. Some of my diagnoses are a little bit stigmatized (becoming less so, thanks in no small part to the blogosphere, I believe!), so it gives me a way to connect with other diabetics and infertile women. And it has emboldened me in my “real life,” too, so I am starting to be able to talk about my conditions and find similar connections in person, too. So I guess blogging has been good training, too. 🙂