I knew when my son Joey was diagnosed with type 1 diabetes that we’d have a lot to learn. Boy did I underestimate just how much. Who would have thought that we’d also have to learn an entirely new language; the diabetes language?
In addition to the new language we had to learn rather quickly, there were a couple of phrases that we in the type 1 diabetes world agree to disagree about. For instance, calling a person who has diabetes a “diabetic.” I personally don’t ever call my son Joey a “diabetic.” I say that my son Joey has the disease type 1 diabetes. He is my son, who happens to have a disease, it’s putting him before the disease, not the disease defining him. And I don’t like when others say he is a diabetic. I take offense to that. Not that you would have known that before today. Words and language can mean different things to different people. We have to respect each other’s choice of words and phrases, don’t judge me because of how I feel, and I won’t judge you.
As long as we all respect each other’s point of view we can agree to disagree. Words can imply or influence the way we feel about things, I don’t want Joey to feel like diabetes has him, and to me the phrase “he’s a diabetic” implies that. It puts the disease before the person, so we prefer terminology such as “he has the disease type 1 diabetes.”
Having a disease like type 1 diabetes requires that you learn a lot in a short amount of time, from how different phrases or words can impact how you feel, to a whole new language of acronyms. We really did have to attend classes to learn how to manage this disease, and 7 years later, we’re still learning.
Learning about Diabetes after Diagnosis
Do you remember what it’s like to start a new job? All of the nervousness about learning your way around the office and learning the new tools? That’s what it’s like for the parents of a child diagnosed with diabetes. Our first two days after diagnosis were spent in the classroom at the endocrine department of the children’s hospital.
It was so scary. I thought, “You want me to do what? Give my kid a shot? I’ve never given anyone a shot before and now I will be doing it every time he eats carbohydrates?” And what about an insulin-to-carb ratio? Hold on, let me take notes. After the class ends, your reality starts. But you do keep visiting your healthcare team throughout the first year to continue your diabetes education.
A Diabetes Lesson
I thought I’d give you a little diabetes 101, because even the language can be daunting. For instance, would you know what the following words and acronyms mean?
T1D, IOB, ICR, A1C, BS, BG, DD, MDI, CGM, DKA, Basal, Temp Basal, Bolus, Correction Factor, Dawn Phenomenon, Glucagon, Diaversary, OmniPod, Insulin Pump, Pods, Fast-Acting
These are just a few of the terms we commonly use when speaking to other D-Rents (parents of kids with type 1 diabetes), as we call ourselves. I’ll use some of the acronyms and words in a sentence to see if you can figure it out (don’t cheat by looking it up!):
“My 12-year-old T1 son, dd 5-10-09, has been on the OmniPod pump for 3 years. We really like the Pods. When we were on MDI, Joey didn’t feel like he could eat whenever he wanted to. The nice thing about the OmniPod is that it shows the IOB, so we don’t have to worry about over-dosing him. His A1C has improved greatly since starting it. I love that I can change his basal rate easily and we can even give a temp basal. His ICR has remained the same over the past year and his BS has been consistent. I also love our CGM. It shows us his peaks and valleys. He still has the dawn phenomenon, which we’ve learned to do a correction factor for at 4:00 AM. Thankfully, we have never needed the Glucagon. Joey uses a juice pouch as his fast-acting sugar source. We’re so happy that we’ve never experienced DKA and hope we never do. We just had our 4th Diaversary with type 1 diabetes and celebrate that he is doing well.”
Yes, this is truly how we speak to each other; it’s like our own language. Now here is what some of the acronyms mean:
- T1D: Type 1 diabetes
- IOB: Insulin on board
- ICR: Insulin-to-carb ratio
- A1C: A test that measures a person’s average blood glucose level over the past three months.
- BS: Blood sugar
- BG: Blood glucose
- DD: Diagnose date
- MDI: Multiple daily injections
- CGM: Continuous glucose monitor
Now, your homework for today: Hug someone you know with type 1 diabetes and their . caregiver. Class dismissed.