Last night, I participated in #dsma, a Twitter event for the diabetes online community. It happens every Wednesday at 9pm EST. I've joined in a couple of times before, but never gotten into it like last night. I've been really focusing on Twitter the last few weeks and finding connections with the DOC.
#dsma is crazy. It's fast paced. That hour goes by like lightning as you're trying to read all the other tweets, submit your own, and truly make an impact with fellow D tweeters. It's insightful and it's thoughtful. For that hour, you are thinking about the diabetes community, how to connect, how to integrate different ideas, how things apply or don't apply.
For that hour, you are answering questions posed by @DiabetesSocMed (aka @Diabetic_Iz_Me's Cherise) and debating/agreeing with those participating in the answers. Last night's topic was about what changes/additions should be added to diabetes management across the board. From there, we discussed how to add those ideas into our lives and any opposition that might occur.
For me, I think the thing missing from diabetes management is a lack of focus on the positives. The small things like a fasting of 100 or a post prandial that only hits 180 or success in certain foods. Things that get missed in the big picture when the doctor, the readers, the nurses, the public are looking at our overall numbers. The A1c, the weight, the diet, the exercise level.
I think this gets overlooked because people have forgotten or they've never understood how deep this disease can be. They don't get that diabetes is in every facet of our lives and every second of our time. They don't understand that it crosses all barriers- physical, mental, emotional, spiritual, and so on.
It's difficult, even as a diabetes blogger and advocate, to translate how diabetes is in real life. I can write about the lows that are bothering me (another one overnight last night) or the way it affects my fertility or the fear that it brings up. But I can't really explain how deep it goes, how emotional this gets and why it does.
Unless you live it yourself or you're a parent/spouse/partner of someone who lives it, I don't think words can relate those emotions, fears, joy. A blog doesn't always translate to reality. A good book or video or social media presence doesn't always tell the world how it really is.
I do think there's a way to cross these borders though. I think we can join forces and take our presence to "the streets" so to speak and help doctors, nurses, providers, and the public understand this disease more. But at some point, we have to stop talking about our advocacy and stop hiding behind the computer screen (I love the DOC, don't get me wrong) and go out and DO.
For me, this has been most of my life with diabetes. I've been doing this disease for almost 19 years. And in those years, I've been honest with myself, with my friends, with my doctors about how this really feels. When my A1c is high or I see a 272 after a not-so-healthy meal, I tell people, you know what: this is life. I'm not going to hide and say everything is perfect. I'm not going to live weighing my food, avoiding everything tasty, and killing myself with management. I just can't. And I'm going to celebrate the little victories.
That honesty is what we need in the public. We need real life diabetics explaining the symptoms, the way diagnosis is, the terror of a night low, the fear of watching your child have a seizure, the happiness in a successful number. We need more people like you and me, instead of Oprah and Dr. Oz, to explain reality with type 1 and type 2 diabetes.
And when we start doing that, you can bet we'll have opposition. Just like Paula Deen this week and the backlash she's received. Words like "confession," "hid," "reveals" are beyond ridiculous and hateful. Our honesty in the public eye (even sometimes in the DOC) isn't received well. Should I "confess" that my A1c is 9.1% or that I eat cake and drink real soda?
No, because that's honesty and I'm human. And this is where it begins.
If you'd like to follow #dsma, you can follow @DiabetesSocMed and join the chat every Wednesday. Be sure to follow me @diabeticechoes as well!





Amen Lindsey!
I was so glad to see you jumping in to DSMA - it's crazy, isn't it?
Honesty is SO what we need. I think it's our duty to tell the full story of our lives with diabetes. The good and the not-so-good. It helps people understand that we're all trying very hard, but that diabetes is also very hard, and sometimes we can't get it to all come together. Doesn't mean we're a failure - just that diabetes got a punch in.