“Having diabetes can be very stressful, and it can bring out all kinds of emotions. Denial, depression, and anger are feelings many people with diabetes have experienced. When you’re first diagnosed, it’s normal to believe there must be some mistake. it’s also normal to be sad or angry over the lifestyle adjustments it requires. The inability to get beyond these emotions, however, can put your health in danger.”
Of all the things I wish I knew when I was diagnosed, I think this is at the top. I don’t remember ever feeling particularly “down” about my diabetes in the early years. Maybe jumping right back into my classes at Virginia Tech prevented any opportunity to truly contemplate what the future of my life would become as a result of this disease. With so much of my life undetermined, I think I just added this to the list of things I had to consider.
These types of nuggets of advice are always tricky for newly diagnosed. There’s so much information out there, it’s easy to become overwhelmed. If you perform an image search on the word “diabetes”, you’ll get the clichéd injection pictures next to amputations. If you look for non-medical perspectives on diabetes, there’s a whole mess of blogs, and patient communities to discover.
Tandem Diabetes has decided to not allow current t:slim users to upgrade to their new Dexcom-integrated pump when it hits the market. You can read their justification here. As you can imagine, I wasn’t very enthusiastic.
I sometimes wonder if sharing my Dexcom and blood glucose meter readings is counterproductive. Reminding other people with diabetes that they aren’t alone in their struggles or successes with diabetes is great, but what happens when I start to self-censor what I share because it’s not “good enough”?
If I have a few consecutive days out of range, sometimes I prefer to keep that to myself. There’s nothing wrong with a little privacy, but when I become explicitly aware of that need, I think it has a negative effect on my diabetes management. Something to the effect of “I’m not doing my best, I need to focus more on myself, but that focus means I’m not sharing with the community, and sharing helps the community, but I’m not helping the community if I’m not doing my best.”
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 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.
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…
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.
Compared to last year, total impressions more than doubled. From 2,600,626 in 2014 to 5,349,262 yesterday.
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?
Christel Marchand Aprigliano is my guest this week to talk about all things Diabetes UnConference. From the origins, to planning, from execution, to lessons learned, we cover everything. Plus, we discuss the scheduled 2016 conferences, Christel’s 5 and 10 year plan for the UnConference, and revisit her podcast from many years ago, Diabetic Feed. Enjoy.