Back when my child was diagnosed with diabetes, I figured I knew a thing or two.
Not only did my great aunt have diabetes (and I spent most Thanksgivings with her and her sugar-free blueberry pie), but I’d watched “Steel Magnolias” and “Con Air.” What more training can an expert need?
Now, 24 years into being a “D-Mom,” I know real things. Like the fact that most parents of kids with type 1 diabetes (T1D) know the carb count of eighteen billion foods by heart but cannot recall what meeting they had this morning (it’s not our fault!). And the fact that iPhone autocorrect will always want to make “blouse” out of the word “bolus.”
Here are 10 things we all may have *thought* we knew about diabetes before it actually came into our lives, that we never seem to stop hearing from other people:
“She has the bad kind of diabetes.”
I remember thinking the difference between my grandfather’s diabetes and the gal in my college group’s diabetes was just that: He had the “good” kind, she the “bad” kind.
Other than eliciting memories of the “Curb Your Enthusiasm” episode about the good cancer versus the bad cancer, this also reminds me not to roll my eyes when someone asks me that. Because it can seem that way if you don’t drill down to understand.
To be clear: The only good kind of diabetes will be, one day, the kind that is curable.
“People with diabetes cannot (fill in exciting activity here).”
I remember when a friend was diagnosed as a young adult, thinking, “Oh my gosh, there goes my back country ski buddy!” Nope. And to every person with diabetes or parent of a newly diagnosed child, let us be clear: It need never stop you from doing what you love. (Evidence: Will Cross and famous mountain peaks; Jay Hewitt and Ironman competitions. Paralympic Gold Medal cyclist Pamela Fernandes. I rest my case.)
“She can have all she wants! It only has natural sugar!”
Somehow, the idea that the natural sugar in things like apples or grapes won’t impact blood sugar levels is a thing. In our early years, my daughter went to a sleepover and when I picked her up the next day, her blood sugar was sky high. The dad said, “I don’t know. I only gave her these juice boxes because – see? – it says natural sugar!”
To be clear: Sugar is sugar, a carb and a carb, and they all make your blood sugar rise. Natural or not.
“She can have all she wants! It’s artificially sweetened!”
Repeat above: a carb is a carb. And honestly, with last spring’s toilet paper shortage, we should all be wary of artificial sweeteners in excess (because you know, the chemicals they contain often go ‘straight through you’). (Eww.)
“Your life will change in every way.”
I mean, diabetes does add a new layer onto every minute and every action. That said, in time, it should become (most of the time) background noise. That early feeling of “I have to quit my job to care for my child!” or for the person with diabetes to think, “I CANNOT have diabetes and still be a (nurse, bus driver, juggler, whatever)” isn’t reality.
The truth is, you will feel like it changes everything, but in time, your regularly scheduled activities and days pretty much return. Even the mundane chores you hate. (Sorry to say.)
“Your life won’t change a bit.”
The flipside of the above comment is also a falsehood. I remember, before my own daughter joined the club, being super nonchalant when someone I knew was diagnosed diabetes. After all, that person had gone off to a week-long school/hospital visit and been trained. Now they were back at work and that shows that their life did not change a bit, I thought.
Oh, the laughing I do now over that perception. Diabetes is the duck in the pond. My friend was seemingly cruising along, but under the surface, I now know, she was paddling hard to stay afloat and learn how to live that “normal” life. Her dainty purse had also been replaced by a small suitcase that carried what she needed to work. (I mean, pretty much).
“She cannot go barefoot: she might lose a limb.”
How could this be funny? First, because even after 24 years, I find it wildly funny that people actually thought it was a great idea, when seeing my young child with diabetes for the first time since her diagnosis, to remark that as long as she avoids jelly doughnuts (that’s not natural sugar in there!) she won’t “lose her leg like my aunt did.” Who says that? (Lots of people do.)
The happy reality I have learned is that today, for the most part, those kind of complications (for a person living in a developed country with even minimal health support) are pretty much a thing of the past.
That knowledge helps me to simply laugh and roll my eyes, even while someone is making a comment that could destroy somebody else’s hopes and dreams.
“She’s not safe unless I’m constantly watching her CGM data.”
The newest funny is the idea that before continuous glucose monitoring (CGM — which is of course wondrous and totally useful technology), people with diabetes were simply unable to go places, live alone, sleep at night, play sports, go on vacation, or go off to college.
They did. We were part of it. And it was fine. Technology is amazing for enough reasons to write at least five more stories. But the idea that people with diabetes 100 percent can’t live without technology is silly. We all need to shake that notion off, methinks.
That said, here’s a fun trick: If you have CGM or Dexcom Share at work, set the alarm to the baby cry sound. When it goes off (because they always do), simply open a desk drawer, look down and hiss, “I TOLD you to be quiet in there!” Then slam it shut and go back to working without saying a word to your co-workers. Please? And tell me how it goes.
“Eventually she’ll be ‘regulated’ and it won’t be that much work.”
Regulated is one of my “trigger” words from the old days. When folks would say such things as that, I’d clench up like a demon ready to shoot laser beams out of my eyes and turn them to dust (if only I had that skill!). Now I laugh.
Other words or statements that did the same and now make me laugh include “non-compliant,” “It’s juvenile so she’ll grow out of it,” and the ever-popular and always hilarious “if only you’d just fed her right, you’d not have to deal with this now.” Some comments are not worth reacting to at all, am I right?!
“Insulin will be pennies a bottle.”
Now I’m really laughing. Until I think about Trump’s “cheap as water” comment, and remind myself that some people actually believed that hooey.
Moral of the story: A little wisdom goes a long way in this diabetes life. Or, when hearing inappropriate comments, remind yourself that “this too shall pass.”