Welcome to the second day of Diabetes Blog Week, and if you missed the launch of this community blogging event, you can check it out here.
Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself?
(This is not an attempt to
get you out of your comfort zone. There is no need to elaborate or
tell personal stories related to these aspects. Simply let us know what
kinds of stories we will never hear you tell, and why you won't tell
Personally, I'm mostly an open book when it comes to sharing online about my diabetes. OK, not 100% of everything, but I do share most things without hesitation. Those items that I do keep to myself are kept out of public view for a particular reason -- maybe I'm not ready to talk about it, or maybe I haven't quite figured out how I even feel about it yet. Really, it all depends on what I'm focused on at the moment and how that intersects with the rest of my life's happenings. Here are some thoughts about sharing -- or not sharing -- that I'd like to share today ;)
I do not share the names of my doctors, even though I do sometimes write about our office visits and interactions without naming names. The reason is simple: it's not fair to call someone out without first asking or at least informing them that they'll be referenced publicly. If one of my doctors were to write something online for public view, or even just within the view of the D-Community, then I'd say identifying them is certainly fair game. But as it is, I just want to share some of my experiences and frustrations from doctors' appointments, knowing that my D-peers will relate to that. So I think these interactions are OK to air, as long as my doctor's name isn't attached. In my mind, this is roughly equivalent to having my data pop up in a case study presented at a medical conference -- that's OK as long as it's anonymous and follows all the patient privacy rules.
The issue of personal medical data being shared online is an interesting topic. It's a personal choice, or comfort level, that everyone needs to decide for themselves. For me, it's never been a big deal to share my A1C and blood sugar numbers -- especially since I don't believe most people looking at my data are going to be judging or pointing their virtual fingers at me (although that can happen!).
Still, I've noticed my own comfort level shifting over time. Lately I've begun hesitating more about sharing that D-data because so many companies and even payers are turning to social media and "watching" like Big Brother. If I share my A1C and how I'm slacking on my carb-counting or daily BG checks, or even that I'm taking a pump or CGM hiatus, will that get back to my insurance company and influence my future coverage of a particular device? These concerns have started creeping into my mind more often as the years pass, and I don't know what the answers are.
Yep, I'm still sharing a lot of my personal D-data, but these days I am a lot more cautious about what details I put out there than I used to be in those earlier days of diabetes blogging/Tweeting/Facebook-ing.
I'm careful when it comes to sharing about my family.
Yes, my mom does read my blog posts. As does my dad. And my wife. (Hi, All!) So, there's always that need to make sure we're communicating about something ahead of time, i.e. that "tell before it's published" commitment that I always need to keep in mind when getting ready to bare my heart and soul online. My family is very supportive of my open sharing, but that doesn't mean I've got a blanket approval to tell anything and everything that goes on among us.
As to sharing aspects of my diabetes life with them offline, that can depend on the timing, too. If we're having a particularly stressful time in life general, I may not share my daily blood sugar challenges and D-woes that aren't overly important in the grand scheme of things, when it feels like my family has bigger concerns.
I do get scared about future complications, and sometimes the fear of that uncertainty brings me to tears -- but I don't always share that with others, in part because I don't want to upset my family, and also because sometimes I just don't want to bring the mood down. Especially when it's a particularly stressful work day, or when someone else is celebrating happy news and it would shadow their happiness, or if I've already been "Mr. Diabetes Downer" recently and I am trying to balance it all out.
These aren't secrets, as I'd define the word. Rather, I am just trying to shield those in my life from the negativity I may happen to feel about something at the moment. It's a defense mechanism, and one that I like to think is helping in the short-term. Because really, these are all things we've talked about in the past and will definitely discuss again -- just not at that moment.
Ups and Downs
Of course, this all brings up the whole philosophical point about sharing both the good and bad, but not wanting to go overboard in either direction. What is the perfect balance between keeping it real and wanting to experience a "Me Too" moment, and just being overly negative or seemingly too cheery? Everyone has to walk that fine line in a way fits their own lives best.
Of course this issue goes beyond just sharing about diabetes in our own D-Community. It's everywhere in this social media-connected world we live in, in which people mostly share only a selected "version" of themselves online -- mostly their "best-of" self -- and keep other parts out of public view. It's not breaking news that good news is more popular than bad, and a study in January actually confirmed that Facebook statuses are more positive than negative, in large part because we don't want our "friends" (the actual ones and those we may not even know) to think of us as killjoys.
I have to admit that deep inside I feel that way too, even when I'm writing about some of the not-so-positive aspects of my diabetes life...
If I want to complain or vent anonymously, it's good to know there are resources like My Diabetes Secret, a site that allows you to bitch a little and share your deepest, darkest D-secrets without revealing your identity.
To me, it comes down to responsible sharing that fits your life. As with everything, Your Diabetes and Sharing Preferences May Vary. And that's totally OK.
This is our post for Diabetes Blog Week 2015, Day Two. See what others are sharing on today's topic, too. And don't forget to use the #DBlogWeek hashtag on Twitter to follow all the many DOC contributions!