For nearly five years, I have been documenting my life with diabetes. Not each entry has been directly about the illness, but this is my life and diabetes is in it and in everything I do, diabetes is there. For the past couple of months, I have become a more active member of the twentysomething blogger community, going so far as to join the administration team at the Ning network 20sb as an Events Manager. It’s exciting to meet new people and hear stories of other twentysomethings who are going through similar struggles. In the same way that reading diabetes bloggers mirrors my emotional struggles with a chronic illness, so do twentysomething bloggers mirror the emotional struggles of work, relationships, money and family. In a handful of posts that I have written this month, some of my non-diabetic readers have thanked me and told me that I have taught them things they did not know about diabetes.
This is my dream, my goal.
Yesterday, while tweeting with several members of the diabetes community about the train wreck that is Dr. Oz trying to talk about an illness he has no medical expertise in, an idea came to me. It’s something that I had been mulling over for awhile now, and is just beginning to take form. I attend many social media events and read a lot of blogs on social media and blogging, and one thing that I have noticed is the recurring theme that a way to get more readers and more attention is for you yourself to write a blog post on someone else’s blog. And then I reflected on the Love Harder campaign, which was begun by a twentysomething blogger named Brandy who wrote about her boyfriend’s potential diagnosis with multiple myeloma cancer. It spread throughout the community, bloggers posting her open letter asking for prayer. And when it was found that he did have cancer, the community banded together to support them by creating the Love Harder campaign and so far raised over $3,000 for the cause.
This gave me pause to consider what the diabetes community could do if we stepped outside our community.
For so long we have talked amongst ourselves, primarily. We get visits from newly diagnosed parents, aunts and uncles and friends of newly diagnosed or perhaps a spouse or a new relationship blossoms and the partner wants to get educated. Primarily, though, we are visited by people just like us, but at varying stages on the road with diabetes. So they visit us and we tell them what it is like for us, and how bloody complicated it all is and what we do to not go bat-shit crazy all that. This is important. Support is a vital aspect of living with a chronic illness.
We don’t spend as much time talking to people who are not part of our community. Well, we do. We write about how much unwanted accusations can frustrate us, how nobody understands us, how they judge us and make us feel guilty. But the people who we’re talking to? They don’t read our blogs (usually). So what if we visited them? What if we elected to go out to The Others, the mommyblogs, the personal finance blogs, the social media blogs, the health blogs, the fitness blogs… all the blogs to whom we think would listen to our story, and tell them what it is like.
What I proposed, in a rather crazy tweet that I gave about .36 seconds of consideration, was to create a Diabetes Bloggers Bureau. Of course, as Elizabeth Arnold quickly reminded me, many of us aren’t bloggers, but are lurkers, commenters and forum participators, so then I changed it to a Diabetes Speakers Bureau. Our mission would be simple: spread the word of life with diabetes wherever we can. Whether this is on a blog, in a newspaper, at a support group, or to a group of doctors, pharmaceutical representatives or public relations professionals who talk about this disease as if they knew what it was like. I’m not sure when I’ll be able to get it launched, but I wanted to share what has been on my mind and as usual, ask for any guidance, advice and support that you have.
In fact, after I posted this brief idea, a personal finance blogger contacted me saying that if we had a personal finance story related to diabetes, he would be interested in hearing about it. See? I haven’t even started and we already have our first request!
Clearly, based on the current state of diabetes information in the general population, we need to become even stronger advocates for ourselves. No longer is it enough to simply write on our own blogs or tweet to each other about the injustices of the media. We need to do something! It won’t be quick and it won’t be easy, but there is something exciting about the prospect of teaching what our lives are like to people who are only exposed to the idea of diabetes through the deaths of Hollywood starlets and the fear-mongering of daytime television.
No longer will we sit by and let people talk about us in third person. This disease is not happening to “them.” It’s happening to us. We are intelligent individuals capable of speaking up for ourselves. Think outside the blog.