PatientBloggers at BlogHer09.
The catalyst that brought me to BlogHer was a conversation back in October 2008 with Lisa Stone. Lisa and I met at the BlogHer Outreach event in October and I talked with her about the patient blogging community and how we're truly changing our health outcomes through blogging about our illnesses and connecting with others.
I will admit to being very nervous before this panel, because it's one thing to write online behind the protection of a computer screen - another thing completely to speak candidly before an audience about our personal health issues. But sitting there, in front of people who actively sought out the PatientBlogger panel, and elbow-to-elbow with some terrific patient bloggers, I felt like it was almost instantly comfortable once the discussion started.
The PatientBlogging Panel at BlogHer '09. For some reason, I'm not smiling. But I was v. happy.
Jenni opened up by talking about the highs and lows of patient blogging, including the notion of being defined by our diseases. Easy for me to chime in there - "That's actually the tagline of my blog, and I think it's important to remember that diabetes is definitely a part of me, but it's only one part of me. I'm also married, but that doesn't mean I'm only someone's wife. There are many, many parts to the whole. Diabetes is just a part of me."
We talked about what it was like to connect with people who "get it." About connecting both on and offline with people who share our experiences and sharing best practices while making it clear that we aren't offering medical advice.
"Big, fat disclaimer, guys." I kept repeating myself, when asked how we deal with people thinking we're offering medical advice. "It's not medical advice. We aren't perfect. 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.”
Loowa talked about her experiences with chronic pain, and how she battled the healthcare system to get the care she rightly deserved. As a panel, we chimed in with our similar stories of what being a patient in this healthcare system is really like, from Casey fighting for insurance coverage for injections that would preserve the positive outcome of a previous surgery to Jenni talking about how her condition (fibromyalgia) isn't even recognized as legitimate by the medical field at large.
It was like being in someone's living room, having coffee, only we were miked and people in the audience raised their hands to ask questions. But it was intimate. Comfortable. We, as a group, were protected within that room. People spoke their minds, and let themselves cry, without fear.
So much that Ree of the Hotfessional boldly took the microphone, introduced herself, at at the gentle urging of Mr. Lady (okay, Mr. Lady offered to make out with her but work with me on this, I'm in the moment), pulled off her wig and exposed her beautiful bald scalp to the room. "I look like I have cancer, but I don't." Ree lives with alopecia and despite her assertion that she doesn't experience "symptoms" of her illness, she is a professional woman in a professional environment, dealing with being bald as a woman.
"No one has seen me without this, except my husband and my children." She was crying, along with almost everyone else in the room who was watching her in awe. "The way you react mentally to your life with your illness is your own business, but putting it out there, you will get the support you want. It will do wonderous things for you."
Sometimes it's hard for us to blog about our diseases. It can be really emotionally intense to log on to your blogging platform and post, for the whole internet to scrutinize, the real struggles we experience as we live with chronic illness. Sometimes readers lash out and attack us for our opinions or our care regimen. Sometimes we are forced to have thicker skin than we'd like.
But sometimes blogging about our conditions is what gets us through the day. Sometimes it's the email from someone saying, "Hey, me too," or "You helped me feel stronger today." Sometimes it's the comments from people who really understand what it's like to live with these diseases. And sometimes it's simply knowing we aren't alone. And that we never have been alone.
And now, with the support and love of our communities, we never will be alone again.
Patient blogging ... that's some powerful stuff. This was an inspiring experience, I'm honored to have shared this panel with such inspiring women, and I'm humbled to be part of this incredible community.