It was a video taken in the middle of the night: a child with diabetes half asleep in bed, fighting off the straw to a juice box her mom was force-feeding her. As the girl grimaced and pushed away the juice in her sleep, her mother filmed it, and then posted it on social media.
The mother meant well. She wanted to show the world just how hard it is to live with type 1 diabetes. But hours later, she had second thoughts and asked close friends if she’d done the right thing. She decided she had not, and took the video down.
This reminded me of something I’d been pondering recently, a topic which has come up before in the diabetes community. Can we raise our kids with diabetes to not appear to be sick, and still win the emotional, financial and overall support we need to change the future of diabetes?
I believe the answer is yes. In fact, I’d argue that the social media trend toward sharing the brutal, scary and sometimes invasive moments in our kids’ lives with diabetes actually might be hurting our effort.
I realized long ago (we are 20 years into diabetes parenting in my house), that while balancing blood sugars, avoiding spikes and treating lows was certainly urgent and absolutely important, there was something more crucial I was charged with doing as a diabetes parent. My job was to raise a balanced, happy, secure child; one who just happens to also have diabetes.
To me, here’s what sharing dramatic and scary stories on social media does to our loved ones:
1. Makes people scared. But not in a way that helps our kids.
I’ve seen it more than a few times; the diabetes parent who shares stories of terrifying overnight lows, describing forcing straws into sleeping mouths to get sips of glucose down, sometimes filming it for dramatic impact. Sure, it’s scary. But then, often, I see the same parent complaining that no one will have their child to a sleepover. I’m not sure you can have it both ways. In other words, you cannot dramatize this disease and make it seem totally unmanageable and then expect the world to not be afraid of it.
2. Exposes private moments in your child’s life without their fully-understanding, adult-like consent.
I know you asked your son if it was okay to share the photo collage of him throwing up and going to the ER. He’s ten years old said it was fine. But kids don’t get it. They don’t know now how they will feel later. It is our job as their parents to protect them, from their bodies to their souls. So take the videos or make the collages if you must, but save them. When your child is 16, 18, or 21, you can let them decide what to do with the images. Remember, everything we share on social media is out there forever. I don’t think it’s fair to a child to paint a woeful picture of their life from the start. And some children grow up wanting to be private. I have one child who, like me, is an open book. My other is private and rarely shares much on social media. Had I shared intimate moments in her life when she was a child, I’d have violated what she believes in before she even knew what she believed. It’s her image, her life, her story. Not mine.
3. Scares your child.
I hear it more and more now: kids at camp afraid to go to sleep without a parent there to make sure they are “safe.” I was told a story recently of a child whose parents share a boatload of dramatic moments on social media telling another young child that they had to stay close to their parents because they “could die at any moment.” I won’t debate whether or not that is true with diabetes, but I will say this: those parents think they are doing right. They think – “hey, my kid is little. He or she doesn’t read what I share on Facebook.” But it soaks in. It comes off the screen and permeates the world we are creating for our children. And it can hurt their ability to feel secure.
I propose we diabetes parents work at inspiring the world by sharing how awesome our kids are, how even with all the diabetes-related challenges they face, they are well-adjusted, independent, don’t feel limited, and are just plain cool. Capture them charging the field in lacrosse. Video the time they went nuts in the pool, laughing like there wasn’t a care in the world. Photograph them on a mountain peak, or a stage, or a bike, or just smiling away. Calmly remind folks of the bravery behind the image.