Last week, d-bloggers hit social media scene in two ways. First, there was the Roche Diabetes Social Media Summit in Indianapolis… and immediately following that, patient-bloggers took on BlogHer ’09 in Chicago! Kerri Morrone Sparling, author of Six Until Me, was a panelist on the BlogHer panel for patient-bloggers and Lee Ann Thill, from the The Butter Compartment, was our on-the-ground correspondent and shares some of what she learned.
A Guest Post by Lee Ann Thill, author of The Butter Compartment
Last week, as I was preparing to leave for the Roche Diabetes Social Media Summit and the BlogHer Conference, I was delighted to get a request to write a guest post about the BlogHer break-out session, “PatientBloggers – You Are Not Your Disease, You Just Blog About It Every Day” on which Kerri Sparling from Six Until Me was going to be a panelist. This session was high on my list of things I was anticipating at BlogHer ’09 in Chicago, so I enthusiastically accepted the assignment.
Digital voice recorder in hand, I got comfortable in the front row next to my fellow D-blogger and friend, Rachel from Tales of my Thirties, for what I hoped would be an inspiring and thought-provoking session with like-minded women who put their personal business online in the hopes of both finding and giving support to people they might not otherwise meet who really “get it”.
The moderator was Mr. Lady from Whiskey in my Sippycup, and in addition to Kerri, the other panelists were Jenni Prokopy from Chronic Babe, a whirl of positive energy who’s living with fibromyalgia; Loolwa Khazzoom from Dancing with Pain, a passionate woman who was in a hit and run car accident, and found pain relief through dancing when the traditional medical establishment failed her; and Casey Mullins from Moosh in Indy, who shies away from being called a patientblogger (or a mommyblogger or a _______blogger), but had an extraordinarily difficult pregnancy, and has written about that, infertility, and depression. They represented a broad range of experiences, and certainly, a broad range of medical diagnoses, but they shared a common thread. They write about living with diseases and medical conditions, they write specifically about those conditions from the patient point of view, and they write about making life happen in the midst and despite managing illness.
Mr. Lady spelled out the agenda: the pros and cons of patient-blogging, the always sticky issue of disclosure, and lastly, the transformation of a patient blog over time. Because these issues are interwoven, the discussion was very fluid, with experiences and points expressed by the panelists and attendees that reflected that overlap.
Chronic Babe, Jenni, mentioned the practical disadvantage of always needing to write and having to come up with ideas. Jenni also said: “There are moments when I blog and I feel like, not that I’m being inauthentic, but I’ll be writing something really positive and uplifting, but I still feel really crappy… There’s a responsibility once you start doing it to keep bringing it because your readers want it and really need it, and sometimes that’s really, really tough – but sometimes that really lifts me up.”
Kerri reminded us that we shouldn’t expect to be perfect because that’s what sets patient-bloggers apart from more informational and educational websites – and other patients benefit from seeing that it’s OK to just do the best you can with what you’ve got at any given moment. “Just because we’re patient-bloggers and we’re writing about our illnesses, it doesn’t mean we’re awesome at managing them. I’m writing about diabetes every single day, I’ve been diabetic for 23 years, and I don’t have perfect blood sugar results.”
Along those same lines, Casey identified the value of being able to honestly share the ugliness that comes with health problems and medical conditions, and how even people who aren’t in the trenches with us fighting a common enemy can benefit from patient blogs. “Through blogging we’re able to share that it’s not always unicorns and rainbows. We as bloggers have a way to educate lay people about what we’re going through.”
The disclosure issue elicited one woman’s tearful description of being diagnosed with an auto-immune condition in which her white cells have made all her hair fall out (ah, that pesky immune system just has a way of wreaking havoc in countless ways for so many of us). Not only does she not have to shave her armpits, but now she wears a wig. “I’m perfectly fine. I don’t have symptoms other than what you see here,” referring to her de-wigged scalp.
She said she wrote a blog post about the experience, describing the emotional fall-out – no pun intended – and then the resulting confrontation from her husband who wanted to know why she had kept all of her feelings inside. She ended by saying that we don’t have to put the emotional “stuff” out there, but if we do, the support will be there. Disclosure, while frightening and possibly risky, can result in support you could never have found otherwise.
Regarding disclosure, Kerri also talked about a pretty specific concern she’s had as a blogger using her full name, a concern I very much share as someone who’s been actively job-searching – finding jobs from employers who really have nothing but disincentives to hire a person with diabetes. She explained that she was lucky to get a job at DLife, but acknowledged that it was an exception. Should she ever find herself in need of a job in the future, the reality is that disclosing to anyone with an internet connection that you have diabetes can come back and bite you in the rear.
The benefits of being a patient-blogger added up quickly though despite any real or perceived disadvantages. The word, “community”, was mentioned again and again and again, which should be no surprise to the Diabetes Online Community. Finding a sense of belonging via blogging and social media when that community doesn’t exist in your day-to-day life can make such a difference in your outlook and how you manage your illness.
In the spirit of community, some of the audience members shared their personal experiences, and I was humbled to be among so many fabulous women putting it all out there on the internet by writing about some pretty personal, even painful stuff. There was Elizabeth Norton from Celebrate the Silver Lining, who’s been through the wringer, having been misdiagnosed with a fatal illness in a quest for answers from her healthcare providers. Next to me sat Katie from Overflowing Brain, whose brain is too big for her skull. She had surgery to repair the problem, and not only did the surgery not resolve it, she now has other medical issues as a result of the surgery.
Also of interest, especially in light of the Roche-sponsored Diabetes Summit, some representatives from Johnson & Johnson were present – and taking notes. I don’t know about you, but I definitely feel validated that Big Pharma is taking notice of patients and what we have to say in a way that I think will ultimately result in the paradigm shift I mentioned right here in response to Amy’s post last week that we need to have the healthcare we deserve.
Just as our relationship to Big Pharma seems to be transforming thanks to patients who blog, patient-blogging is a vehicle for our own transformation, which was the final theme of the panel discussion. Loolwa described her personal transformation from a very athletic young adult to one who was incapacitated by chronic pain and resulting depression to an empowered patient who found alternative means for managing her medical issues that consequently changed other aspects of her life, namely the course of her career. She said one of the core reasons she started Dancing with Pain “was to motivate and inspire” herself.
Loolwa made some excellent points about transformation. While I can’t emphasize the value of finding community through patient-blogging enough (whether you’re a writer or a reader), in the end, patient-bloggers do this for themselves. I’m certainly inspired to blog about my life with type 1 diabetes because I want to help others, but that’s ultimately secondary. Primarily, I need to help myself feel good about a disease that doesn’t always make me feel so good. I need to acknowledge and be OK with the ways diabetes affects me, both physically and emotionally. If I can’t at least be taking strides towards that, I don’t know that I’m in the best position to be a source of support or inspiration for others. I know the reasons for blogging and the benefits derived from it vary to some extent from one patient-blogger to the next, but my ever-evolving relationship with diabetes is in a constant state of transformation, driven by the truly remarkable power of patient-blogging.
Thanks, Lee Ann, for sharing your thoughts with those of us who couldn’t be there – and thanks to Kerri for representing the D-community on the panel!