To Share or Not to Share: My Approach to Diabetes Data
By Kerri Sparling
How Kerri Sparling navigates CGM sharing with friends and family and how it’s helped her feel less self-conscious about her numbers
Sharing my continuous glucose monitor (CGM) data was a leap of faith for me.
When I was a kid, I’d keep my blood glucose meter turned close to my body when checking, away from my mom’s vision line. I was planning on telling her the result, but I wanted to see it first, to digest that data point before passing it along to my caregiver.
Now, decades later, I’ve become a lot less protective about my diabetes data. I’ll open the CGM app on my phone and let the pigeon head show itself, not really caring who can see it. (The little circle with the blood sugar number in it and the small peak pointing in the trend direction looks so much like a pigeon to me. I can’t un-see it.) My daughter might ask what the number means. My husband might glance at it. My son sees it and yells at it simultaneously; “ONE TWO FOUR, MOMMY!” (He’s two. And learning. And loud.)
I’ve been using a CGM since 2006. Back in my earliest experiences with the Dexcom STS, I stalked those numbers like a hungry lion. Every beep made the hair on the back of my neck stand on end. I held my numbers close to my chest. It was so new and so foreign, this steady stream of blood glucose data, that I was exhilarated and humbled and admittedly a little bit scared on a daily basis. See the ebb and flow of my blood sugars put so much into context for me.
When my husband first started following me using Dexcom Share back in 2014, he had the same response. He called when I was high. He called when I was low. If I was traveling, my Dexcom alarms would BEEP! and my phone would ring almost instantly. We were both intense about these numbers.
Level-setting our responses was necessary, and it helped peel us both off the ceiling in terms of watching my data. (We modeled our conversation off this SUM Musings post about CGM etiquette from a few years ago; I still stand by the need for awkward discussions in pursuit of better outcomes.) We needed to get comfortable with these numbers, and tame our visceral responses to them. It’s been several years now, since my husband has been able to view my CGM data, and I asked him the other day how it’s changed for him.
“When you were pregnant, it was a big deal. I wasn’t able to see your CGM when you were pregnant the first time (in 2010), but this last time, I always called when you had a longer low blood sugar than usual. And you asked me to check in when you were high then, too, because you didn’t want to run high at all while pregnant,” he said.
“Now? I check the most when you’re traveling. I always keep the phone by the bed so I can hear your alarms when you’re away, and when you’re low in the middle of the night, I always text. And if you don’t respond, I call.”
This is what we had agreed upon, back when we talked about how to handle the shared data. This approach works for me, because feeling micro-managed breeds resentment and burnout for me.
Over the years, the people I’ve shared my data with have changed here and there. I always share with my husband Chris, sometimes my best friend, once or twice my mom, a few times a colleague who wanted to see what diabetes might look like for a few days, etc., and I've found myself way less self-conscious about my numbers. Maybe it’s because I’m older and less attached to pursuits of perfection (perfect is sold as the enemy of good, isn’t it?).
Or maybe it’s a combination of things, including that comfort again; the comfort of seeing this information and letting it inform my decisions.
I talked with a few other long-time CGM data sharers about how sharing data has evolved for them, over the years.
Melissa Lee, diagnosed with type 1 diabetes at the age of ten, has shared her data for years. “[I am] five years into sharing my CGM data. I don’t think my husband watches during the day at all anymore, but he has only my urgent low alarms configured. He wakes me for lows in the night, still.”
And it’s not always people living with or caring for diabetes who end up following CGM data, and that window into diabetes can be eye-opening. Kerri McKay, a patient advocate outside of the diabetes space, said, “I’ve been following a friend for about 6 weeks since he got his Dexcom. While I’ve seen all the graph pics over the years from people, it’s super interesting to see the alerts in real time—gives me a much better sense for what PWDs deal with.” And PWDs deal with a lot – Adam Brown covers 42 factors that affect blood sugars in this piece.
Samantha Merwin, parent of a kid with type 1 diabetes, talked about how their sharing decisions have changed over time. “For us it’s changed with his age. We started with Nightscout and Share cradle in 2nd grade to keep him safe at school and social events. From 4th - 6th [grade,] he’s mostly using the data during day to take care of himself there and we monitor at night. For fun we change out the alarms every couple of months so we don’t get too used to them. It also helps with his response time, and mine at night. We never take a break, especially now that it’s integrated with his t:slim, he absolutely loves seeing the number on his pump and not having to take out his phone at school.
My own mom repeatedly calls my CGM a “GPS,” and I think that’s also accurate, because my CGM graph shows the journey that my blood sugars have been on that day. And the act of sharing this information is very personal, because it opens up a discussion that has the potential to feel accusatory, or over-protective, or insightful … depending on how the diabetes breeze blows. But looking back at over 12 years of CGM use and almost five of giving others access to that data, I can say with certainty that using a continuous glucose monitor has made an enormous difference in how my family and I handle diabetes.
… and I’m able to have that perspective because I have had access to this technology. Not all people with type 1 diabetes are able to access CGM technology, and many with type 2 diabetes are still fighting insurance companies for access. Wendy Pederson, living with type 2 diabetes, highlighted the need for CGM approval in the type 2 diabetes community. “I’m still dreaming of a CGM, and will be until my insurance approves use for T2s on insulin.”
The future of CGM is a community of people with diabetes, not limited by type or finances, able to use this technology to improve their outcomes. To be safe. And to experience life beyond their diagnosis.