I was thinking about diabetes privacy this morning while I was poking through the archives, and came upon this post from Diabetes Blog Week last year. (Here’s a full list of the contributions generated by that prompt.)
What do you share about your diabetes? And what is on your List of Absolutely NOT Sharing, diabetes-wise? For me, I don’t share my A1Cs with any regularity. Because as thick as my skin is in some respects, it’s admittedly very thin in others.
But hell yes I’ll post a photo of a 24 hour no-hitter on my CGM graph, because I’m proud of that accomplishment and I want to document it for my own sake. Sometimes I feel a little creepy about posting a photo like that because it does not illustrate a true “day in the diabetes life,” but it’s nice to freeze frame a moment that I feel proud of instead of looking at a graph of Ms and Ws and throwing up my hands* in frustration.
Diabetes doesn’t always play nice, and I don’t always have a calm head. Sometimes I go full Veruca Salt-rage when the effort into diabetes management doesn’t produce a stable flat line but instead reduces my glucose meter to what feels like a random number generator.
Diabetes goals feel really personal to me. Back in 2009, when I shared that my A1C wasn’t under 6.5% when I conceived my daughter, I received criticism for not having my numbers under “good control.” What gets lost in translation is the why of some decisions, like I was aiming for a slightly higher A1C earned without a pile of debilitating low blood sugar events. My medical team and I had reasons for making specific decisions, ones that I don’t feel the need to constantly have to defend.
So I remain quiet about a lot of diabetes specifics. I’ll share what medications I’m taking and what devices I’m wearing, but where my high alarm is set at on my Dexcom receiver might not be publicly shared. I have my A1C taken regularly, but I don’t post a running tally of it anywhere. The specifics of my data – blood sugar or blood pressure or weight or CGM values – do not define me as a person and do not dictate my ability as an advocate.
But seeing diabetes in context, the real juggling act that takes place to take a crack at making proper sense of this disease, is what I appreciate most about our community.
To revisit a thought from years ago: “diabetes isn’t a perfect math where you can just solve for X. Usually, we’re solving for ‘why.‘ And part of that equation is acknowledging, and appreciating, the sum of our community and what we document, every day.”
* this phrase has always grossed me out – “throwing up my hands” – because it’s hard not to picture someone throwing up their hands, vomit-style.
In moderating a Tumblr that enables the anonymous sharing of diabetes secrets, I’ve seen that the emotions of diabetes are largely left unshared (publicly). I think there could be a crying wolf situation if we shared all of the times we were frustrated by this disease. People would tune us out – or think we aren’t trying.
I try to be more balanced in sharing the good and not so good days of this disease, but most of the time I opt for not sharing at all because I doubt the impact I make. That self doubt is a much larger conversation, I think.
Sniffer.
Kerri, I aplaud you for what you do share and when you or for that matter anyone else shares something that I feel is not right or correct. I realize that what was shared was/is about that person’s progress and that my diabetes is not their diabetes and my progress or goals are different and anyway who am I to judge, what makes me so perfect. I’m not perfect by a long shot. We take our A1C way to seriously and yes it is a way to measure our progress but it’s not a average, but a compilation of our highs, lows and our good middle of the road numbers and a record of our unseen struggles and yes it sometimes looks like we failed to some people. My thoughts on that are, where the hell do they git off judging me, only I have the right to do that. So Kerri, you share what your comfortable shareing and to hell with what those other people think, they have way too much time on there hands and are a far cry from being perfect themselves.
John,
I agree completely!!!
Sandy
i love it when other t1s share info- for one, it helps me feel more “normal”, and because it’s just interesting to me. i don’t judge people for their numbers and if people do judge me by mine, they aren’t really my people anyway! 🙂
thank you so much for what you do share. it’s good that you know your own boundaries and what YOU feel comfortable sharing, and not.
I’ll publicly share my A1C when I share my weight…um, never.
I stopped sharing my son’s A1C online a few years ago and have cut way back very specific diabetes info. I can’t believe it took someone else to (gently) tell me.. that’s not mine to share. I’m grateful this happened when my son was still very young and I tell other parents to think twice. No one needs a running total (in list form or otherwise) of their A1C and private health information on the internet. Such a great topic. We all just want to help each other (and feel good about the good times, cause hell yeah!) but a little bit of caution is a good thing.
Thank you for sharing your highs and your lows, my daughter was recently diagnosed type 1 at age 20 she’s 21 now and she’s going through a very hard time accepting and dealing with it while away in college. It breaks my heart that there is so little I can do but I want to thank you for letting me into your world which in turns allows me to understand better what my child is going through. I can only pray for a quick miracle cure but in the meantime,we all need to learn to not judge only you know what is like.
God Bless
I have a teen daughter with T1D and I’m constantly telling her she doesn’t need to feel judged by her blood sugars – just use them as a tool and it’s no one’s business! For the first 2 years of her diagnosis the school nurse tried so hard to demand her A1C but I would not share it – I’m with, Deb – it’s like asking someone’s weight! This year we have a new nurse and I shared that it is personal and between my daughter and her doctor. The new nurse respects that and I’m thrilled. No one asks me what my blood pressure is or how my cholesterol is or how well my bowels move – why should they ask such personal questions of my daughter?! I do love your blog, Keri, and appreciate what you do share. It sometimes gives me insight to understand my daughter a little more. Thank you!
I was diagnosed just before 16… I’m now 30. I remember the teenage years, and it was a real struggle to not feel defined by my numbers. I never was angry about diabetes, never went through a stage of rebellion or outright denial of even having the condition… but I definitely attached enough of a value to the numbers that I would go many days without testing. I guess down beneath my “lojicking mind” I thought those numbers said I was either a success or a failure… and I was more comfortable living in the ignorance than with actually doing a fingerstick and finding out.
I don’t know when I learned that I’m a person, not a number… but I applaud your efforts to help your daughter avoid the trap I fell into. And now I’m so blessed to have made it through that hurdle alive. Otherwise, I was responsible with my diabetes care… and I think we all need reminded sometimes that it’s ok to struggle with our diabetes. Yes, it’s part of who I am, but it isn’t all of who I am. And even when I’ve got the “Ms and Ws”, I’m still being successful.
Kerri, ur blog is amazing and it’s ur blog so continue to only post what is comfortable for u!!!! Please know that at the beginning right after my diagnosis when I found SUM, u helped make a scary time much less intimidating!!!!
Thanks u for sharing what u do post so eloquently yet laid back at the same time!!! I’ve learned a lot from u, so thank u from the bottom of my heart!!!
I am, as they say, an oversharer. I have my A1c history in a chart on my blog (http://www.sweetlyvoiced.com/p/a1c-history.html)…but it’s because I have already beaten myself up enough in life over those numbers that they’re now battle scars I wear pretty proudly (http://www.sweetlyvoiced.com/2014/10/more-than-number.html). I want to show the reality of it.
STILL, you don’t see me announcing my latest A1c in social media without providing that context. I have a place for sharing it and it serves a purpose in that place because it’s part of my lengthier story. As you said, people don’t know the context of the numbers. And I’ll deal with criticism or praise as it comes my way for that choice because there’s no hiding stuff you share online.
Also, I will share my CGM data url with just about anyone. Mainly because I can’t make sense of it, so I am hopeful somebody else can. HA.
I didn’t know that you kept a running list. I know that Scott does, and I admire the ability you both have to distance yourself from the critique. I know my thresholds for self-criticism when it comes to A1C values, and I know I’m better off not inviting more scrutiny.
But I like your style. 🙂