To Share or Not to Share

Type 1 Diabetes Blog

To Share or Not to Share

A few months ago my life changed for the better when I joined the ranks of people living with diabetes who use a continuous glucose monitor (CGM).  For years I heard people say it was life changing and they couldn’t imagine living without it once they got one.  I am now one of those people.  My CGM makes such a big difference to living with diabetes.  I realize now just how little information I used to have, even with 10+ finger pricks a day.  I was flying blind.  Now I recognize patterns I didn’t know existed before.  Admittedly, I don’t know what to do about everything I see, but this is a learning process. Or to be more precise, it’s a learning by doing process.  And it gets easier and better every day.

So after a few months on my CGM, I was cruising along, a happy camper with tons and tons of information at my (less sore) fingertips.  And then I went to a diabetes conference and on the sidelines, I had numerous conversations about the Share function with my fellow PLWDs.  And while I loved the amazing peer support and the myriad tips and tricks we shared with each other all weekend, I left feeling a bit confused, and wondering if perhaps I’m doing something wrong. You see, I don’t “share” my data with anyone except my endocrinologist. I am not shy about my numbers, nor am I ashamed of them. I’d be happy to share them if anyone cared. But really, who else wants to see my 288 daily data points?  

The issue for me is not that I don’t want anyone else to see my numbers, it’s that by enabling the share function, I am not just giving someone access to my numbers, I am actually asking someone to assume responsibility for trying to save my life when I go low. Yes, I realize I am oversimplifying and there’s actually more to it than that. Sure, it would be nice if I got a text from someone saying, “I see you’re 300, that must have some great lunch. What did you have?  A tostada?  Oh man, I love those too!”  Or “I see you’ve been in the 50’s three times in the last 24 hours. I know how miserable that can be.  Are you feeling ok?”  Yep, that would be nice, too.  And not too much to ask of another person.  But rarely does a day or night go by when I don’t get at least one alarm.  Last night, I slept through the night without an alarm and my first thought when I woke up was, “shoot, is my new receiver broken already?”  My point is, after only a few months, I’ve already grown weary of my alarms and they are MINE! They help me to help myself, so I’m weary but grateful.  They don’t do anything for anyone else.  It’s hard for me to imagine another person following my diabetes 24/7 with me. Someone who is not my doctor, or not my spouse (which I don’t have). I don’t want to ask my closest friends, because they don’t have diabetes, and despite the fact that they care for me, they don’t really want to know anything more about diabetes. And I don’t hold this against them – it’s perfectly normal.

So the sideline conversations with my PLWD friends were really thought provoking and kind of uncomfortable. I left wondering, why wouldn’t I want someone to help me in a potentially life threatening moment?  As a fiercely independent person, I am struggling with the concept of asking someone to do this for me.  Up until the share function entered my life, managing diabetes was a 100% completely solo venture. I have heard more than once (in a sort of back handed complimentary way) “you are the perfect person to have diabetes”, in part because I can handle difficult things independently.  Now I have the option to “share” and I’m not sure how to go about doing it.

Over the course of the weekend conference, four PLWDs offered up their time and effort and quite frankly, their complete generosity, to be the recipient of my data.  So now I have someone (four people in fact!) to share with.  I just have to decide if I really want to – or can – share. It’s an awfully big step for me, but I’m thinking about it.  And by the way, I am 216 at the moment, and yes, the tostada was really good.