I spend a lot of time writing about diabetes within the diabetes online community, but I don't have a lot of opportunities to bring diabetes advocacy outside of certain parameters. I've done some guest blogging for non-diabetes sites, but for the most part, I speak about and to the diabetes community. Sometimes my advocacy efforts exist within a bubble.
But last week, I had a chance to step entirely outside of my comfort ... bubble? and speak with woman bloggers who aren't living with or caring for diabetes. It's very humbling to sit in a room with women who have lost a child. Or who have traveled to Africa to work towards eliminating pediatric AIDS. Or who have made a difference for women who are dealing with depression or anxiety. Women who can make you laugh while they describe the darkest moments of their days. Women who can find something beautiful with just a click of their shutter.
On Thursday, I traveled to New Jersey to meet with members of the Johnson & Johnson team, the Edelman PR team, and some very powerful bloggers in the parenting space. I was honored and humbled to be in the company of Alice Bradley, Karen Walrond, Heather Armstrong, Ana Roca Castro, Catherine Connors, Katie Allison Granju, Jennifer Hutcheson, Nirasha Jaganath, Isabel Kallman, Jyl Johnson Pattee, Ellen Seidman, Heather Spohr, and Allison Worthington. An intimate but inspiring group gathered (and dubbed 'a salon') to talk about using social media to contribute to social good.
When it came time to introduce myself to the group, I was shaking with nerves, not sure how I ended up in this room full of change-affecting women. (They DO know I blog about my cats, right? I mean, really.) I stammered through an introduction, unsure of what to say or how to measure up to these fellow bloggers, but hoping that they'd reweave my words into something that properly represented the passion and power of the patient blogging community. After introductions, we talked. All day. Stories were shared; people laughed because it felt right and because it filled a moment where tears would have otherwise flowed. (But tears flowed at times anyway.) We discussed topics including preterm childbirth, pediatric AIDS, using social media to help educate new moms, and how we, as social media influencers and strategists, can impact positive change in these areas.
And these discussions really embedded themselves in my brain, because it became clearer and clearer that blogging is more than just a web page filled with musings. A blog, and a blogging community, is a vehicle for change. Diabetes bloggers are helping to raise awareness and funds for a disease that much of society ignores or misunderstands. I think that diabetes bloggers make a big emotional difference for ourselves and our fellow PWDs, but I do think we can do more. And after sitting with these really inspiring women, I'm both inspired and convinced that we CAN do more.
What, exactly? I'm not sure, but there are a few ideas percolating in my brain. I am tired of diabetes being a condition that is ignored by society as a whole. Just because we don't look sick until we're dealing with serious complications doesn't mean we don't deserve a cure. And just because many of us have grown up past the "children with diabetes" phase doesn't mean that our adulthood with diabetes should be written off as "easy" or unsupported. The support I've received from the online community has been changed how I manage my diabetes and the emotions related to chronic illness, and I want everyone who is living with diabetes to have access to this kind of care.
I left the meeting in New Jersey renewed as an advocate and amped up as a member of the patient blogging community. And I can't wait to develop and implement new ideas with our diabetes online community. More to come, but for now, I'm just INSPIRED.
[Disclosure: Johnson & Johnson paid me a consulting fee to attend their New Jersey-based Salon and advise on using social media for social good. I was not paid to write this post. I'm also sure there are typos in this post. Opinions expressed, as usual, are my very own.]