There is a link being shared on facebook. The link takes you to a number of greeting cards that were created by a cancer survivor. They are great and got me thinking. In the short time my boys have had Type 1 we have had some doozy of comments, everything from herbal cures, sugar causes it, to it can't be that bad. I decided last night to ask the boys if they could only say one thing to someone about their disease what would it be. Sugar Bear said "I wish they knew it is serious." And Drago said, "I'd want them to not judge." I think the cards created by that cancer survivor came about exactly because of these two things. I get the not knowing what to say when there is a loss or serious illness. I've been there, done that. Our society paints a perfect picture of positivity and when something goes "bad" we don't have the tools to always handle it. We weren't taught. What we don't know makes us uncomfortable. It makes us uneasy.
"I wish they knew it is serious." How bad can it be? I mean, it's not cancer. They can live a full life. They can do pretty much anything they want (within reason--they'll never be in the military, fly planes commercially, or drive commercially). So why would this be something on Sugar Bear's mind? A typical day has him waking and having breakfast at 8am, but before he even eats we check his blood glucose with a needle. Anyone who thinks that doesn't hurt should check theirs, 8-10 times/day every. Single. Day. Okay, so that's a "minor" inconvenience. After checking then it is time to add up the carbohydrates in his meal. We try to stick between 40 and 60. Just for your amusement, a glass of milk has 8-16 carbs for one 8ounce glass. Okay, after we've done that it's more math to figure out how much artificial insulin to dose. And this is where it gets "serious". I don't mean the pain of the shot, or the time, or the hassle is "serious". It is the insulin. Too much and he risks going low, seizures, and death. Too little and he goes high which can cause DKA, coma, death, and just that serious thing of later in life complications like blindness, amputations, heart failure. We are not a pancreas. We aren't as terrific as what our own organ does naturally. It's scary to think that human error could be so devastating. And we do this and these calculations every single time he eats. And he has one other insulin he takes, not the one for meals. This one is the long lasting one. It's the one that is injected at 10pm once a day. It's the one that keeps him from going super high, that helps with the use of blood glucose from the breakdown of proteins and fats. It's the background insulin. And all of this is a "normal" day. When you add exercise, stress, and all the other variables in life it can get confusing and overwhelming. And when you are sick it takes it all to a whole new level. So, yup, it is serious. It doesn't go away. The only constant is that it always changes in the way we keep managing it. It isn't controllable. We can only do our best with the life saving tools we have at hand.
"I'd want them to not judge." Oh wow, this one. Coming from a newly diagnosed teen. How to approach this subject. Not easy. We all make judgement calls. Sometimes those are necessary. I'm thinking in emergency situations. But I know precisely where he is coming from for this statement. The first thing people seem to think when you mention diabetes is that you yourself somehow caused it therefore they don't have to worry about getting it because they wouldn't make the same choices you would make. And that if you would just change xyz you would get better. Diabetes doesn't care if you are a baby, a child, or an adult. It doesn't care about skin color or your religion. It doesn't care if you only eat raw organic vegetables or McDs for every meal. When an organ in your body stops doing what it is supposed to, there should be no judgement. No "well that's why" comments. And when the emotions run over because of that disease and how it is effecting you, comfort and understanding would be preferable.
I work towards awareness and education so that changes can happen. Especially in the way our relationships interact after a diagnosis of diabetes. I don't like the stigma that the word diabetes conjures for society. We all need to change. Yes it is serious and please don't judge.