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.
Unless your child is over 13 years old and can actually understand giving consent to post stuff on social media I think this is a very bad idea!! Would you post your most intimate moments when you are at your most vulnerable for all to see? Probably not!! So why would you do this to your child?! This is not the way to raise awareness. I am a parent of a child with type 1 diabetes and I do not understand why parents want to splash their children having a hypo all over social media.
I see both sides to this discussion. On some sides of course we need to highlight the victories.. and other times I think awareness as to what this disease really is is valuable too. People see “healthy” kids and assume what we face is no big deal. I think there can be a shared balance that will show strength and battles. We want people to fight with us and see why funding and support matters. I hope I show both sides and ALWAYS so how amazed I am with our brave and bold girl!!
I think at some point, hopefully soon, parents will begin to realize how wrong it is to showcase their child online. Online never goes away and one day those babies will grow up and realize their entire life has been posted for the world to see, and they had no say-so in that decision.
Nope, share yours if you must, but never your child’s. Trust me no one cares and no one needs a poor me, blogger.
I am in a PRIVATE online group that allows parents to discuss Type 1. I listen and also share in a private setting with only Type 1 parents. I cannot remember a time when one of the Type 1 parents posted a picture of their children in a bad situation. However, in a non-private online group I see so many parents putting all their child’s private moments online. Yes, it is a scary disease and yes, I want support but there are ways to get it without posting your child’s most delicate moments online. Sorry, but if I am laying… Read more »
Great article. I have seen kids who are afraid to go to sleep and those with high anxiety levels due to fears of lows. We need to definitely be careful what we are communicating to our children plus how the world perceives what we are posting. Great point on showing how terrifying a low is in the middle of the night and then wondering why friends’ parents don’t want them over for sleepovers!
Just curious if this “person” who said giving a juice box to a diabetic is like giving a cigarette to a cancer patient. Where did he go to become an endo?
ok giving a juice box to a kid with diabetes is like giving a cigarette to a lung cancer patient. Don’t feed sugar/carbs to people with diabetes period! This cure is free and doesn’t cost a dime to the health care system.
People with type 1 diabetes have to take insulin to stay alive. PERIOD. Insulin is a crude drug at best and often people experiences highs and lows that are out of their control. Juice is a fast, safe, effective way to treat a low blood sugar. Any doctor will tell you that.
Huh? Do you have a child with Type 1 diabetes or are you an endocrinologist? This is exactly what you are supposed to do when your child is suffering from hypoglycemia (which occurs in insulin dependent people with diabetes for a variety of reasons). Hypoglycemia can be mild but it can also be a medical emergency.
Crack a book, Rajeev. It might help you stop sounding like a rambling buffoon.
Rajeev Samuel, your overwhelming ignorance of Type 1 Diabetes is showing. Please go read about this incurable autoimmune disease, recognize you made a stupid comment, then come back and delete it. Good blog and much to think about, Moira.
No it’s not. It’s a life saver !!! When blood glucose drops your body needs sugar to raise Glucose to normal levels. Type 1 diabetes does not have a cure, the pancreas is dead. I recommend getting your facts straight about type 1 and type 2 before commenting on an article like this.
You are confusing type 1 & type 2 diabetes. Type 1 diabetes is an autoimmune disease not caused by eating habits or any lifestyle choices. The pancreas of a person with type 1 diabetes does not produce insulin at all. There is no cure for type 1 diabetes. If a child has Type 1 diabetes they are at risk of experiencing extremely low blood sugars. If this happens they must consume sugar/carbs in order to avoid passing out, seizures, or even death. A parent giving juice in the middle of the night is actually a life saving choice. Had she… Read more »
Withholding sugar from someone with diabetes would kill them during a low.
It is clear you don’t understand type 1 diabetes. A low blood sugar in can be deadly. The only way to raise it to a healthy livable level is to feed carbs, such as juice, or inject them with glucagon. A type 1’s body produces little to no insulin so they rely on injections, hydration and activity to help lower blood sugar and at different points in time thier bodies react differently to the insulin. The meal they eat today for lunch may have little to no effect on them but the same meal for lunch tomorrow might cause them… Read more »
Rajeev – When a diabetic on insulin has a very low blood sugar, they need straight glucose to get there blood sugar back up. That is how you do it! It is like medicine at that point. You have no idea of which you speak! In fact, please educate yourself, because if someone you know is a diabetic on insulin and goes into a low in front of you, you may need to grab a juice or some candy to give to them before they can no lower drink or eat because they are having a seizure or are unconscious… Read more »
Rajeev, apparently you have no knowledge on this disease. Lows must be treated with sugar of some sort or the person dies. Educate yourself on type 1 diabetes before you vomit ignorance on the subject.
Rajeev Samuel, you have no idea what you are talking about. Before you make ill informed comments, do a little research on TYPE 1 DIABETES.
You need to be educated. An insulin dependent diabetic does not produce insulin without insulin you die. In healthy people the pancreas makes insulin needed to keep a body functioning. The insulin dependent person must inject a dose of insulin based on a rough guess as to what they think the body will need without the wonderful hidden body organizing self function organ. So if the insulin they give is to much because the body does something unknowing different they need carbs to save their life. So no juice to an Insulin dependent person is not like a cigarette. Cigarettes… Read more »
You need to look up the difference between type 1 and type 2 diabetes. Type 1 is an autoimmune disease- the immune system attacks the pancreas leaving it permanently unable to make insulin (the life sustaining hormone that enables us to turn carbs into energy- you cannot live without insulin). A child with type 1 will have life threatening lows. If you don’t give them sugar they will die. Type 1 is a horrible, relentless disease that has no known cause or cure. These kids did nothing to get it and can do nothing to get rid of it.
Giving a juice box to a kid with TYPE ONE diabetes is keeping them from passing out because of a low blood sugar. You clearly don’t know what type 1 diabetes is. It’s not caused by what the person eats or doesn’t eat. It’s an autoimmune disease and there is no cure. Comparing it to a cigarette? Really?
Rajeev- go read about TYPE 1 diabetes…
juice is a lifesaver to type 1’s….
you have no clue..’
While i respect that everyone can have their opinion, I’m not sure advocating letting a child with type 1 diabetes die from hypoglycemia is actually a “cure”.
Anyone with knowledge of the subject knows fast acting carbs (juice boxes for one) treat hypoglycemic shock without having to go too the ER.
Lol, you obviously don’t know #1 about type 1!
Juice boxes and fruit snacks save lives!
Please get an understanding of how diabetes works before making such statements.