This post is a response to a tweet which asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”
I wish people understood about the seriousness of diabetes and how much someone with diabetes has to do and deal with on a daily basis, with never a day off. I know I minimize what we do when someone asks me. When friends ask how the kids are doing with their diabetes, I tend to say “fine” or that they are handling it ok. And for the most part, they are.
Most people do not understand that diabetes is a life or death illness. If my children do not have their pump on for several hours, their blood sugar will rise and can eventually lead to death. Or if their blood sugar goes too low, they could have seizures or not wake up. So moms worry about those things. When Josh or Sara go off to a friend’s house, on vacation with friends, or stay home with someone while my husband and I go somewhere, although I try and educate the friend’s parents, I’m not sure that some of them grasp the real dangers that can happen.
Even things like going to a friend’s house to swim, or going to a summer camp where they will be swimming and doing activities where the pump might be off worry me. While I try not to worry, diabetes is always in the back of my mind.
Spending the night with friends also causes me anxiety. I wonder what their blood sugar is in the middle of the night and if they are ok. I know when they go to bed that if they are high or low, that I need to set an alarm to get up and check their blood sugar in the middle of the night. But other parents don’t know to do that. I always get Sara to text me her blood sugars, (though I know she gets tired of me asking) and will tell her to set an alarm if needed.
So one thing I wish people knew is that diabetes is tough on people. I know it from a mom’s perspective. It is hard to understand unless you actually have diabetes or kids with diabetes. Because we have to get education about diabetes to take care of our children, we understand the dangers. We see all the tears and frustration in our kids, from trying to get out of changing infusion sets or taking a shot or just all the fingersticks for blood sugar checks. We see the moodiness and irritability that can come from fluctuating blood sugars. We know the emotional energy it takes to watch and count the carbs in everything our child eats. Having your child be different and having friends ask what their pump is or why they are checking your blood sugar is hard for them.
This is why I wish for a real cure, not just something like an artificial pancreas, though that would be great too. I wish for a cure so that I do not have to watch my kids do all they have to do to just stay alive.