Enhancing My Diabetes Secret

I wrote this for My Diabetes Secret, but I figure it’s worth sharing here, too, since I repost a lot of stuff from that blog. For context, I’m constantly thinking about how I can improve My Diabetes Secret and My Chronic Disease Secret. Simply being is not enough. There are better ways to connect people with the blog, each other, and if necessary the proper resources they need. Am I doing everything I can to serve whatever mission I have in my head with all this stuff? Probably not, but I’m going to keep working to make it better. I can promise that much.

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That Went Well, #dayofdiabetes Edition

I’m incredibly proud of the turnout #dayofdiabetes garnered yesterday. There was a lot of a lot going on, but I think the net message was well communicated – this thing we do every day, managing this disease and staying alive, is not easy. And, the diabetes online community can be quite vocal when called to action.

I haven’t had an opportunity to dedicate enough time to look at all of the metrics, but here’s what I can share after a quick glance at some Symplur data…

  1. You all showed up. Big time. 2,248 tweets from 362 users. For reference, last year’s group #dayofdiabetes effort (April 10, 2014) generated 1,495 tweets from 275 users.
  2. Compared to last year, total impressions more than doubled. From 2,600,626 in 2014 to 5,349,262 yesterday.
  3. It should be noted that total #dayofdiabetes data received a significant bump from the #dsma chat that took place last night, thank you Cherise.

What I want to look at, for my own curiosity, and in anticipation of my upcoming AADE presentation is the overall makeup of the participants in both yesterday’s and last year’s #dayofdiabetes. How many patients shared their day? How many health care professionals engaged with and encouraged their peers to follow along? How many brands promoted the hashtag? How many brands abused the moment to promote something?

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7 Reasons Why You Should Participate in #dayofdiabetes Tomorrow

Tomorrow, April 15, I’m encouraging anyone who wants to participate to live-tweet a day in the life of a person with (or caring for someone with) diabetes. Use the hashtag #dayofdiabetes to keep track of everything, and I’ll do my best to Storify everything on http://dayofdiabetes.tumblr.com.

As a community, we’ve done this a few times, and I think each day has been more successful than the last in terms of outreach and impact. I’m hoping tomorrow will be just as meaningful for some of you.

In case you need a reason to join the fun, here are seven reasons that might do the trick and get you to participate.

  1. You can find new people in the diabetes online community to connect with. These group efforts are a great way to make new friends.
  2. It may help get over burnout. Sometimes a focused effort like this is just what you need to get back into the diabetes frame of mind.
  3. Sometimes an exercise like this can help remind you that this may not be easy, but you’re doing just fine keeping this disease in check. When you step back from all the tweets and realize just what it takes each and every day, that can be something you can be proud of.
  4. Help describe what it’s like to your friends and followers without diabetes. Sure, they may have an idea, but a play-by-play like this is quite effective at showing what it’s like, even if it’s only for one day.
  5. Consider each tweet a teachable moment. Together, this is an incredible educational opportunity. And that excites me.
  6. I’m going to bring back the first point I made, because like #dblogcheck, these community exercises are a great way to expand your network of diabetes connections. I would love to hear stories months from now that start with “I saw someone share their #dayofdiabetes and decided to participate. That was the first time I mentioned my diabetes on Twitter.”
  7. Selfishly, I need data. I’m speaking at AADE this year about Twitter metrics from the diabetes online community, specifically #dayofdiabetes. I would love to show up with some fantastic data from all of you to compare to last year’s efforts.

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#dayofdiabetes Returns!

The theory is simple, tag your posts on Twitter, Facebook, Instagram, and any other place you frequent with #dayofdiabetes, and let me know about it. I’ll curate everything at http://dayofdiabetes.tumblr.com.

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Where Are They?

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?

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“Only”

I “only” have fibromyalgia. I do not feel like my chronic illness is severe enough (even though it is disabling and my life has been drastically changed from it) compared to other people’s illnesses. My best friend has RA and MS and I feel that even she does not take my illness seriously because it is “just fibro”. If it is “just fibro” than why am I in so much pain? Chronic illness is isolating enough without having an unspoken hierarchy of who has the worst disease.

Shared on My Chronic Disease Secret

I remember, early in my diagnosis, hearing something along the lines of “at least it’s not cancer”.

I’ve seen plenty of back and forth within the diabetes community judging whether it’s “better” to have type 1 or type 2 diabetes. Or if it’s “better” to be diagnosed as a child or later in life.

I’ve seen far too many comparisons in and among various disease communities attempting an informal and quite frankly inappropriate ranking of diseases.

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Basic Emotions

I have grand plans to categorize and eventually analyze the submissions to My Diabetes Secret and My Chronic Disease Secret based on this grouping of basic emotions. I would love to say things like “this disease experiences more anger than sadness”, or “fear and anger are the most common emotions of people living with that disease”*.

The prospect of categorizing those submissions makes me think about this blog and the range of emotions I’ve shared over the years. I know the early months (and years?) of chronicling life with diabetes was mostly filled with anger. I had a lot of confusion, frustration, and general not-happiness to get out in the open with the hopes of starting to better myself. Somewhere in the middle I found Dayle and emotional content of the blog likely shifted to calmer, more pleasant themes. I suppose that emotional output has largely been the same ever since.

I wonder if the emotional journey of most members of the diabetes online community follow a similar trajectory? So many stories from the newly initiated start with something along the lines of “I thought I was the only one…”, that fear and solitude can fuel all kinds of negative thoughts. But upon discovery of a community of people who “get it” and can empathize with your experiences, isn’t that usually when the flood of emotions begin? Because that’s when all the ugly stuff gets out of the way to make room for new, happy thoughts, right?

The validation that comes from sharing your experiences and hearing “me too” is too powerful to quantify, or qualify. It’s just fantastic. I know it’s impossible to provide that opportunity for everyone living with a chronic disease, but I want to do my part to make that “me too” moment happen for as many people as possible.

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