The second topic of this #dblogweek is “keep it to yourself”.
Sometimes it’s hard to draw the line between what to share and what is best kept private. In general, off line and online, I share pretty openly about my diabetes – usually things that will help me and my own diabetes management or that I think could help others in the community. I don’t have hard & fast rules about what I won’t share publicly online but there is definitely an automatic filter on sharing some of my “deepest darkest” feelings or secrets – so much so that I’m not even sure I could articulate it here.
I have an introverted nature and for years I followed diabetes related blogs and twitter handles but preferred to share my own diabetes story in the relative private space of forums. But 3 years ago when my diabetes burnout had reached an ugly peak, reaching out to the more public diabetes online community and getting involved more actively played a huge part for me in finding balance.
But since I started sharing my diabetes story more publicly online, I have certainly learned about consequences of sharing. This hasn’t necessarily led me to “keep it all to myself” but I have had to work on how I deal with comments and judgements that can and do crop up and throw me a little off balance.
An example : Last September, I was fortunate enough to be able to try out the Freestyle Libre flash glucose monitoring system. I was excited to try it and excited to share my experiences in anticipation of this new technology hitting the European market. My first 24 hours on the Libre was a bit rough. Not because of the device, just because, well – diabetes.
I hesitated to share this photo because of the actual graph but I was excited to show how well the Libre and Dexcom lines compared so I posted it on twitter.
The following day, someone posted my picture to a diabetes Facebook group as it was among the first on the internet comparing the two devices. At first I was amused to find my picture in a place I hadn’t put it. Then came the comment “Interesting diabetes management…”. I would have expected my doctor to be a little alarmed at that particular graph but I’ll admit that I wasn’t prepared to deal with the judgement from others who deal with diabetes every day.
As I said, that day was a hard one. I took less insulin than usual, set temp basal rates, did the same amount of activity as usual, ate more carbs than usual, including about 4 full-sized juice boxes and yet my blood sugar just kept dropping.
I don’t regret sharing the photo because it was exciting to be a part of the Libre trial and for me a big part of that was comparing it to the CGM technology that I already used. But this experience and a few other times where I have seen not-so-positive replies to things myself or others have shared in the online diabetes space have certainly taught me to be prepared for all possible reactions on what I decide not to keep to myself. It is therapeutic to share and make connections with others who “really get it” and it’s important for each of us to think about and find our personal threshold in terms of what we keep to ourselves and what we want to share.
One of the amazing things about the diabetes online community is that there are enough of us (with different levels of openness) that we can almost always find someone else who we can connect with. It is important however that we each remember to respect each other for sharing our stories rather than placing judgement on what is shared.