The last time I wrote something on this blog I admitted that my desire, or more accurately my drive to write had diminished. Obviously, based on the timestamps, that problem still persists. Over the weekend I realized that my lack of initiative here has negatively impacted my productivity where it matters most – my professional career. I never would have guessed that this silly little (sometimes about) diabetes blog would be responsible for generating and maintaining the creative juices that flow through most of my online persona. And that those creative juices are the fuel that power the rest of my professional work throughout the day. But here we are.
As my time, energy, and focus are required elsewhere, the urge to find something to post on this space has declined. For the longest time I felt obligated to maintain some kind of illusion that I was a reliable beacon for the diabetes community evidenced by a new post every weekday. Even if that meant sharing a cat picture and writing 12 words underneath it, you could count on me.
To an extent, this can no longer be the case.
I’m not leaving. But I can’t pretend to be the diabetes advocate I was last week, last month, or last year. I just can’t. This means that I have to be more judicious with my time, and that ultimately means this blog cannot function as it has in the past.
So, when I have something to say, I’ll say it – here. And when I say it, I’ll do my best to make it worth your time to read. But I won’t be here every day. And I’m going to be okay with that.
I often wonder if I deserve to be a voice in the community when I can’t keep my blood sugars in range. Shouldn’t the leadership be left to those who actually succeed at controlling their diabetes?
Shared on My Diabetes Secret
Here’s my two pennies on this one.
The diabetes community is the sum of its parts. It’s what we make of it, together. Sure, there are some more established, more prominent voices that are the result of years of advocacy, networking, and quite frankly, working tirelessly and sometimes thanklessly to advance and elevate the discussion around diabetes. But community leaders are only respected because of the reputation of the community they lead.
The diabetes community grows because more people join the conversation. The diabetes community thrives because of the variety of opinions and perspectives and experiences that are brought to each conversation. The diabetes community is one large, loud, collective voice. The diabetes community is not a few faint voices trying to stand out among the masses.
I took this picture almost a week ago, and I still don’t know how I feel about it.
From a global perspective, all diabetes is a very serious issue. Lifestyle changes, including diet, can make an impact on some people’s life with diabetes. But for the people who, despite their best efforts, must succumb to genetics one way or another, is this advertisement supposed to motivate them? Is it even aimed at them? With such limited real estate to make a point, there’s hardly any room for fine print and clarifications.
One one hand, I understand the direct, sometimes shocking nature that’s required to get someone’s attention. Without their attention, how can you expect anyone to take action? But I fear that efforts like this do more to harm and reinforce stigma and stereotypes than inform and enlist new advocates in the fight to do whatever the ultimate call to action is.
I wish I could better remember my diabetes community discovery story. I know one of the first people I followed when I signed up for Twitter was @sixuntilme. I know at some point I started reading Kerri’s and other diabetes blogs. And I know somewhere in that process I reached a tipping point and created a WordPress account.
But I don’t remember the specifics.
And now, as I’m thinking more about how to expand and improve online disease communities, I feel like that information would be most helpful. For as active and engaging as the diabetes online community is, the numbers would suggest that we haven’t scratched the surface of potential outreach. Considering how many people are on Facebook, use Twitter, do…whatever you do on Snapchat, there’s so much more than can be done. But I don’t know how to begin to reach those people?
Today I read an article on my iPad from the Wall Street Journal about Dexcom’s foray into Apple’s App Store, specifically an app that will display blood glucose values from their continuous glucose monitor on the soon-to-be released Apple Watch.
While the headline is all about Dexcom, the content of the article shifts somewhat dramatically to the work from the Nightscout community, and how their persistence (hence the #WeAreNotWaiting hashtag), brought the conversation about medical device use, regulatory approval, and FDA’s policies on health-related apps to the table much sooner than anyone anticipated.
After I that article, I read a blog post from Kerri about the Spare a Rose campaign. Given the knowledge that there are children with diabetes around the world without access to insulin, and a mere $5 donation means insulin and test strips for a month for a child in need – reread that first sentence.
Wall Street Journal. iPad. Dexcom. Apple Watch. When you see what kind of options we have, and compare it with the lack of opportunity others experience, the contrast in lives is quite stark.
I’m not asking you to apologize or feel guilty. I’m asking you to help make a difference. Help the Spare a Rose campaign provide insulin and test strips to children with diabetes in need.
Today marks my first official day as Patient Community Advocate at Symplur. This means I get to look at all kinds of data collected by Symplur’s extensive tools and figure out ways to bring the patient communities into these data-based conversations. This means I get to venture out into the scary world of freelancing with a mighty first step. This means I get to take on new projects that could help impact and shape the future of online disease communities. This means I have a chance to truly contribute to something – to one day look back and say “I built that”.
It also means I get to write blog posts using data provided by their reporting tool, Symplur Signals, like this one about World Diabetes Day and the #wddchat14 hashtag. And I get to create fun animated gifs like this one
Created by me, via symplur.com (linked)
Blink, and all of your diabetes friends just happen to be nearby.