When my child was diagnosed with diabetes, I thought I knew a thing or two.
Not only did my great-aunt have diabetes (and I spent most of the Thanksgiving parties with her and her sugar-free blueberry pie), but I’d also seen Steel Magnolias and Con Air. What further training can an expert need?
Now, 24 years after being a “D-Mom”, I know real things. Like the fact that most parents of children with Type 1 Diabetes (T1D) know the carbohydrate counts of eighteen billion foods by heart but can’t remember what meeting they had this morning (it’s not our fault!). And the fact that the iPhone’s automatic correction always wants to make “blouse” out of the word “bolus”.
Here are 10 things we all thought we knew about diabetes before it actually came into our lives that we never stop hearing from other people:
“She’s got the bad kind of diabetes.”
I remember thinking the difference between my grandfather’s diabetes and the girl in my college group’s diabetes was just that: he was the “good” kind, she was the “bad” kind.
Aside from having memories of the episode “Curb Your Enthusiasm” about good cancer versus bad cancer, I also remember not to roll my eyes when someone asks me about it. Because it can look like this if you don’t drill down to understand.
To be clear, the only good type of diabetes will one day be the type that is curable.
“People with diabetes cannot (complete exciting activities here).”
I remember when a friend was diagnosed as a young adult: “Oh my God, my ski friend from the hinterland is going!” No And for any person with diabetes or the parent of a newly diagnosed child, let’s be clear: it never has to stop you from doing what you love. (Proof: Will Cross and famous mountain peaks; Jay Hewitt and Ironman competitions. Paralympic gold medal cyclist Pamela Fernandes. I rest my case.)
“She can have anything she wants! There is only natural sugar! “
Somehow, the idea that the natural sugar in things like apples or grapes doesn’t affect blood sugar levels is one thing. In our early years, my daughter went to an overnight stay and when I picked her up the next day, her blood sugar was sky high. The father said, “I don’t know. I only gave her these juice boxes because – you see? – It’s called natural sugar! “
To be clear, sugar is sugar, a carbohydrate and a carbohydrate, and they all make your blood sugar rise. Of course or not.
“She can have anything she wants! It’s artificially sweetened! ”
Repeat above: a carburetor is a carburetor. And frankly, with the toilet paper shortage last spring, we should all be wary of excessive artificial sweeteners (because you know the chemicals in them often “go right through you”). (Eww.)
“Your life will change in every way.”
I mean, diabetes adds a new layer to every minute and every action. That said, over time it should (mostly) turn into background noise. The early feeling “I have to quit my job to take care of my child!” Or, for the person with diabetes, think, “I can’t have diabetes and still be a (nurse, bus driver, juggler, whatever)” is not the reality.
The truth is, you will feel like it is changing everything, but over time your regularly scheduled activities and days pretty much come back. Even the everyday chores that you hate. (I’m sorry to say.)
“Your life won’t change a bit.”
The downside of the above comment is also a lie. I remember my own daughter, before joining the club, was very casual when someone I knew was diagnosed with diabetes. After all, this person had gone on a week-long school / hospital visit and received training. Now they were back to work and that shows that their life hasn’t changed a bit, I thought.
Oh the laugh I make at that perception now. Diabetes is the duck in the pond. My friend seemed to be riding, but under the surface, I know now, she paddled hard to stay afloat and learn how to lead this “normal” life. Her delicate handbag had also been replaced by a small suitcase that carried what she needed for work. (I mean pretty much).
“She cannot go barefoot: she could lose a limb.”
How could that be funny? First, because I find it very funny even after 24 years that people actually thought it was a great idea to see my little kid with diabetes for the first time since she was diagnosed, to notice as long as she avoids jelly donuts (that there is no natural sugar in it!) She will not “lose her leg like my aunt”. Who says that? (Lots of people do.)
The happy reality I learned is that these types of complications (for a person living in a developed country with minimal health support) are largely a thing of the past today.
Knowing this helps me just laugh and roll my eyes even if someone makes a comment that could destroy someone else’s hopes and dreams.
“She’s not safe if I’m not constantly monitoring her CGM data.”
The latest is the idea that before continuous glucose monitoring (CGM – which, of course, is a miraculous and utterly useful technology), people with diabetes just weren’t able to visit places, live alone, sleep at night, play sports, Going on vacation or going to college.
They did. We were part of it. And it was fine. The technology is amazing for enough reasons to write at least five more stories. But the idea that people with diabetes can’t live 100 percent without technology is silly. We all need to shake that thought off, think about it.
That said, here’s a fun trick: if you have CGM or Dexcom Share at work, set the alarm to the baby cry tone. When it starts (because they always do), just open a desk drawer, look down and hiss, “I told you to be quiet in there!” Then slam it and get back to work without saying a word to your staff. Sorry? And tell me how to do it.
“At some point it will be ‘regulated’ and it won’t be that much work.”
Regulated is one of my “trigger” words from ancient times. When people said things like that, I balled up like a demon ready to shoot laser beams out of my eyes and turn them to dust (if only I had that ability!). Now i’m laughing.
Other words or statements that did the same thing and now make me laugh are “non-compliant,” “It’s teenage to grow out of it,” and the ever-popular and always weird, “If only you had fed her right, you don’t have to worry about it now. “Some comments are not worth responding to at all, are they ?!
“Insulin will be pennies a bottle.”
I am really laughing now. Until I think about Trump’s “cheap as water” comment and remember that some people actually believed it.
Moral of the story: A little wisdom plays a big part in this diabetes life. Or, if you hear inappropriate comments, remind yourself that “This will happen too”.