Is Sharing Diabetes Numbers Online Harmful?


Every week on her podcast Diabetes Connections, Stacey Simms tackles issues and news relevant to the type 1 community. In the newest episode, Stacey takes time to personally reflect on our society’s need to share everything and why this might be detrimental when it comes to diabetes numbers.

What we all know

Look, of course, numbers are important. Of course, we need to pay attention to them, but we can’t run our lives around them, we can’t let them have the emotional power that many seem to want to give them. I’ve been guilty of this, too. But you have to step back and recognize they are information, they are guidelines—they are not your value. If your self worth is coming from your child’s or your A1C, I’d really encourage you to step back and think about that, think about why. And then I would encourage you to try to move that good feeling off of those numbers and onto other ways that you’re dealing with diabetes. That can be such a roller coaster. The victories for me, were the smiles with grandparents, bedtime snuggles, milestones like potty training, learning to share. These are all ways of celebrating and as your kids get older, participating in sports or in the school play, getting their driver’s permit… These are ways to celebrate with diabetes that aren’t about the numbers.

Just thinking back, what stands out? If you have older kids, or if you’re an adult with type 1, what stands out for you? Do you remember that excellent doctor’s appointment or do you remember feeling really good and doing something that you loved? Because you have to be in range, have to be taking care of yourself to be feeling good at these times, is my point… What happens is, so many people share only the so-called “good numbers,” but they don’t want to share the so-called “bad” ones. Because if you have publicly celebrated, let’s just say, a 6.5 A1C, you may feel really bad about a 7.8 or higher—let’s be real here.

Safety first

Something else to keep in mind and maybe the most important thing is that for parents, you’re making these choices for your kids. You’re putting their health information online, you’re putting it out there. This is different for adults, these are your choices. But parents: you’re making a decision for your kids and you’re really not getting their okay. And I don’t think a 7-year-old can really decide if it’s okay. Remember, even if you’re in a private Facebook group, nothing online is private, nothing you’re sharing online once you hit send or put it out there—nothing online is private. And that’s really the biggest reason why I stopped sharing [my son] Benny’s A1C. I decided there was no reason for me to leave a breadcrumb trail of health information on the internet for someone – an employer, an insurer, anybody—to find when he was an adult. I don’t care how good his numbers have been. And trust me, they’re far from perfect!

There is a school of thought that you don’t even need to tell younger children what their A1C is and I wish I had done that… A lot of endocrinologists are now writing it down and showing the parents if you’re in the room together or maybe emailing it later through a health portal, which is protected by HIPAA in a way that Facebook obviously is not. You can easily find ways to celebrate or mark time with your kids… We go to a movie, we go shopping, we do a special high five—whatever works for you—but we’re not celebrating the number per se.

Personal take

Back to Benny for a moment: here’s how I know he didn’t know what his A1C was when he was little. A nurse asked him once when he was at camp so he was in a not normal setting. The kids were eating ice cream and I don’t know why the nurse was involved. Maybe they were doing it at the health center, who knows? But he asked for his ice cream and she said, “Oh, I don’t know. Should you be eating this? What’s your A1C?” He was about 8, maybe 9. And he said, “I don’t know.” He turned around and found another nurse and she was like, “Sure, Benny, no problem.” And he told me that story when he came home from camp, but I was kind of glad he didn’t know. And I was really glad that he was smart enough to find somebody to give him the darn ice cream.

I am not trying to be a killjoy here—we all have what works for us. But I urge you try this: you may find it incredibly freeing not to share your numbers, not to share your child’s numbers. You are all so much more than an A1C or the last 24 hours on a graph. And you’re not raising a number, you’re raising a child.

Listen to the full podcast here:

Check out another piece related to this topic – Judgement in the Online T1D Community.

Read another recap of a podcast from Stacey – What is the “Right” Age For Certain T1D Milestones?

WRITTEN BY Stacey Simms, POSTED 01/14/20, UPDATED 11/17/22

Stacey Simms created Diabetes Connections in 2015 and has been its only host and producer ever since. She is the author of The World’s Worst Diabetes Mom, Real-Life Stories of Parenting a Child with Type 1 Diabetes, and I Can’t Cook But I Know Someone Who Can, a benefit cookbook for JDRF. Stacey’s son was diagnosed with type 1 diabetes just before he turned two, back in 2006; she’s been sharing her family’s experience with type 1 diabetes (T1D) ever since. She is an award-winning radio news host and TV anchor/reporter with more than 20 years of broadcast news experience.