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February 5, 2010

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.

13 Comments
  1. February 5, 2010 10:49 AM

    Sign me up!🙂 I want people who would be willing to listen and learn. You have some of the most fantastic ideas. If you need my help, let me know.

  2. February 5, 2010 11:31 AM

    Ditto! I don’t Tweet but am happy to be a resource wherever/whenever needed.

  3. February 5, 2010 11:44 AM

    Allison:

    This is an OUTSTANDING idea! Thought so when saw the Tweet about it, and now am loving the idea as you flush it out in the blogosphere. Very needed advocacy and we’re all ones who can help get the accurate and balanced information out even more to the non-D community. I’d be happy to offer whatever journalistic writing skills I may have, and do my part. Think I’m also going to link to your blog and re-post on mine…. Awesome idea!

  4. February 5, 2010 1:38 PM

    I like the idea, and perhaps we can take a coordinated approach to our efforts, including possibly identifying areas to focus upon and then determine how to make a more coordinated approach to addressing things.

    • February 5, 2010 1:41 PM

      This is definitely going to be a concerted effort in reaching out to blogs in all areas and work with the authors to determine who would be an appropriate guest blogger, so as to reach a wide audience. If you have any ideas on what areas we should focus on, please email me!

  5. Colleen permalink
    February 5, 2010 2:28 PM

    Allison, I LOVE this! Such a wonderful idea. Count me in for sure!

  6. February 5, 2010 4:00 PM

    I think this is a very interesting idea and I am not a diabetic, but I have friends who are, I have collegues and supervisors who are. I have been “lurking” around reading your blog for a while now, and I find it very interesting.

    We tend to live in our own little niches and often people are really unaware of or mis-informed about current issues, illnesses, etc. So I think that openly teaching via whatever outlets are available can only be beneficial to anyone willing to listen! I am not sure if there is anything that I can do to help you out, but I would certainly be happy to.

  7. Cleo permalink
    February 6, 2010 9:31 AM

    That’s a terrific idea. But here’s one suggestion which shows how insidious judgment can be. Using the term ‘lurker’ is quite pejorative. A ‘lurker’ is actually just a ‘reader’, someone who may or may not have the interest or skill in blogging themselves. But what blogger doesn’t want to be read? Why insult your readers by calling them ‘lurkers?’ See how easy it is to be judgmental?

  8. February 7, 2010 12:21 PM

    That’s a wonderful idea!! I’m not diabetic, but my grandma is and I know a few people that are, and I’m totally supportive of you stepping out there and spreading awareness. Way to go🙂

  9. February 8, 2010 6:55 PM

    Great idea!

  10. February 26, 2010 12:54 PM

    That’s a brilliant idea!😀 Bringing together seemingly disparate topics (like finance and diabetes) brings up really interesting angles on both.
    aiming for grace had a post that kind of did this, too, about the philosophical struggle everyone faces with a chronic illness (she points to a NYT article by someone dealing with ulceritive colitis): http://dearada.typepad.com/grace/2008/08/this-is-a-wonderful-article-about-chronic-illness-by-loren-berlin-from-the-new-york-times-though-not-specifically-about-diab.html#comments
    This is slightly different from educating, but I appreciate your nudging to establish connections across communities.🙂

  11. March 5, 2010 5:16 PM

    Awesome idea! I would love to join in….has this idea progressed at all?

    • March 5, 2010 5:33 PM

      Yes, it has. I have partnered with Manny and David on their Diabetes Advocates program and there will be more info forthcoming!

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