It was driven into my head during the very first days we experienced life with diabetes (or life knowing diabetes was with us now. I still think if I’d been a more astute mom she could have been diagnosed three weeks prior. But I digress). From the first days on the hospital floor, doctors and educators and social works said it over and over and over:
Use your words wisely.
Lauren was just six when she was diagnosed, new to kindergarten and still talking about her sixth birthday party (It was a “parade” theme. We asked each child coming to dress like someone you’d see in a parade, and then sent flyers around our street and to the nursing home at the top of our street announcing a parade time. The kids were led around the block, twirling batons, tooting horns, riding decorated bikes as our neighbors and the seniors cheered. Some cake and we were done. How’s that for totally pinterestable?) She’d always been mature for her age and her language skills were on par with some folks running for public office.
But still, the educational team told me, the way I spoke to her about her diabetes would shape the way she felt about it. And it was my job to – even on my own time and in my own mind – learn how to talk about it in a way that helped her think in the positive.
I bring this up because frankly, I’m a bit surprised every parent is not taught this. It just makes sense to me. I can usually tell an “older school” person in the diabetes world by their word choices. After all, I don’t think we got as touchy-feely with emotions and all this until, oh, maybe 15 year ago. (And that does not mean folks did not care then; I just don’t think we thought about language use as much perhaps). But lately, I see parents using terms in the diabetes world that we were taught not to use. It surprises me – I’m not saying they are wrong; it could be that our medical team was just really careful about such things. But in a way, so many of them just make sense to me. So here are a list of words that, as I raised my daughter with diabetes, I chose to avoid. I’ve also included the reasons, which just always resonated with me.
*Good” or “Bad.” If our team said it to me once, they said it to me a million times: there is no such thing as a good or bad blood glucose reading. Because every reading is simply this: information to work with. Every reading is a victory too: it wasn’t long ago folks had no idea what their blood sugars were and had to rely on urine strips and odd readings at the doctors that kind of made no sense. Now we have the ability to know (well, to kind of know … meters have a long way to go before they are perfect), what blood glucose values we are looking at and what to do with them. When Lauren was little, our team told us to never call a BG good or bad because, for the most part, there is not a lot she can do to keep them in range all the time, and calling them good or bad makes it feel like a judgment every time she checked her bg. Makes sense to me.
I remember when Lauren was quite little; she was sitting out on our front porch checking her blood sugar when a friend – who happens to be a doctor – was stopping by. She stopped and watched Lauren go through the process (back when you waited 45 seconds for the countdown. Anyone remember when people would see that countdown and say “She’s dropping!” LOL). When her number came up, that doctor asked “Is that bad?” And tiny Lauren said to her, “It’s not good or bad. It’s just a number.” I always loved that she not only got that but embraced it. (At least while she was little).
Same goes for a1cs. We all judge ourselves on them – we cannot help it. But what if they were just information too, and we stopped labeling them as “Good” or “bad” and instead used them to think about what we need to do next? I’d love to not feel judged by an a1C. Don’t know if that is mentally possible; but not calling them good or bad might be a first step.
*It’s “Check,” not “test.” We are not asking our loved ones with diabetes to perform when they check blood sugars, so its not a test. It’s a check. Checking takes the judgement out of the word for it, and helps move toward that place where they are not good or bad, they are just information.
*He or she’s a child with diabetes, not a diabetic child. Now, I know old-school folks have no problem with calling themselves or their loved ones “a diabetic” or a “diabetic child or person.” I prefer “Child with diabetes” or “person with diabetes” or even “Cat with diabetes” (because my cat is wicked smahhhht. If he had D he’s totally feel odd if I called him a “diabetic cat.” (Because he’d be a Supercat first and a cat with diabetes second. Or longer along the line of all the cool cat things he is).
Diabetes is not who they are. It’s not the total of their being. It’s just something they happen to have to deal with (yeah, all the time. But still). I have always wanted my daughter to be a person first, and a person dealing with diabetes second. I think labeling like this can make people think of you as the disease first, a person second. Would you ever call a child a “cancerous?” I think not. Same should go for diabetes. I know much of the on line community has embraced this and simplified it with things like “CWD (child with diabetes)” and “PWD (person with diabetes)” as acronyms. I applaud that.
*It’s never “regulated” or “stabilized.” This is a harder one, because it is soooo hard to explain to the rest of the world how it is with diabetes. So what’s the right way to say it? Feel free to give ideas here. I hate sounding whiny. What I usually say is “Well, there is no ‘regulation’ or even ‘remission’ with Type 1. Lauren’s blood sugars are constantly changing and that’s why we have to be so vigilant in checking them and giving insulin.” But that’s more one for the outside world, not us. We never say “regulated,” do we?
Those are just a few. And I’m not saying you’re a bad person if you use them (we don’t say good or bad, after all!) That said, it has always made sense to me and I’ve tried to stick with it all these years. Are there words you prefer to use over others? Share here. Because our words do matter. We need to use them well.
Oh, one last thing: a few words I always use to describe all the folks I know living with Type 1 Diabetes:
Awesome. Brave. Amazing. Determined. Caring. Helpful. Beautiful inside and out.
17 thoughts on “Using Words Wisely: They Really Do Matter”
Love it Moira! Great points, and since we’ve talked I’ve been trying to use “check” instead of “test” – of course “test” is how we were introduced by her doctors. I’m pretty sure I’ve done a better job at switching to “check” than Sarah has, lol.
I agree that no number or A1c should be strongly good or bad. I do praise Sarah for doing such a great job managing her diabetes – but if/when it gets more challenging, then we will deal with that without judgement.
I’m totally with you on “regulated” and “stabalized”. Sure, she can be regulated… for about 20 minutes between when her Novalog from the prior meal wore off and the next time she eats – sometimes. Diabetes is a minute by minute disease. Every time you eat it changes. Every time you are active it changes. Every time you are sick it changes. Every time your hormones change it changes. Other than that… it’s totally stable.
Haha Michelle! yeah — other than that – totally stable. LOVE IT
I wrote about this years ago. It still gets me when people call him diabetic. I just posted on facebook asking, “What if there were a cure, would your diabetic disappear?” I wasn’t being silly, they are children/people NOT a disease.
Great post Moira!
I don’t think I use the word ‘test’. I believe I say ‘you need to get your sugars done’, or ‘it’s time to get your sugars done’, or ‘take your sugars’, or ‘get your sugars done before you eat that, do that, etc’. Something to that effect. So check and test are rarely in my vocabulary. As for all the ‘numbers’, I just record them, enter them, and give the insulin and food and that’s it. No big fuss, just do it.
Laura — makes me wonder if the Boston area docs are better at getting us to “get this?”
Absolutely love this post and I’m rofl at Michelle! Yeah, totally stable.
We use test and check interchangably. Thinking about it most often we tell her to check her sugar, but we have been known to say ‘have you tested yet?!’ when she “forgets” because she’d rather not be interrupted from whatever else is more important.
A term that irks me, in addition to the ones listed, is brittle. Hate when someone asks or refers to her as brittle.
oh man I meant to add “Brittle!” Thank you so much for adding it!
Thanks so much for posting this. It means a lot that a person living with diabetes feels these things. My son is six and I try everyday to choose my words carefully. I hope I am as much as possible keeping it in the background of who he really is!
We have a team somewhat like yours. They talked to us about “good” vs “bad” and ALWAYS emphasizes that the A1C is only one tool used to be the healthiest my girls can be. We speak in a diabetes shorthand; “check?”, “time to check”, “on board?”, “number?”, “send it” (the correction bolus), etc. I admit there are some sighs that sneak out but in general I try hard to only use the numbers as a tool to tell us what to do next.
“Send it!” I love that one! Thanks for sharing.
I like this post a lot. It reminded me (yet again) that I need to stop referring to my son’s numbers as good or bad. (its just so hard to do). I have been thinking about your last question about diabetes being “regulated” or “stabilized” … I would also like to add to that list “controlled”! I hate when people ask if we have my son’s diabetes under control. I think a better word is “managed”. We are managing!
I agree with everything you said and wish all hospitals and clinics were as forward-thinking as you. Our clinic here not only labels results ‘good’ or ‘bad’ but only two hours after diagnosis, the dietitian called me a ‘bad parent’ for allowing my son to choose what he ate and the quantity (he has many food allergies and can often tell a reaction before he swallows). They also refer to the children as ‘good’ or ‘bad’ based on the A1C and constantly push the ‘testing’. I couldn’t wait until he was old enough to choose another health care provider! Having learned the terms at diagnosis, it takes a conscious effort to change and I admit to using the word ‘test’ at times. We too are managing on a minute-by-minute level and try to explain this when asked if it is ‘controlled’.
You’re simply the best. Each blog is phenomenal. And poignant. And useful. Love you, my most fabulous friend, fellow D mom and mentor!
I just happened to find your blog and this post by a very happy accident through the Type1Parent Facebook page.
Thanks for shedding the light on the words to use and not to use.
We use check instead of test because a test indicates something that you can fail and you can’t fail with your blood sugar numbers.
I also try avoid using the word disease and chronic illness/condition because he is first and foremost a healthy child that just happens to have to check his blood sugar, take insulin shots and remain on a health diet for the rest of his life. What is wrong with a healthy diet?
He started a new school this year and the way he described diabetes to his new friends was simple. I’m paraphrasing here but he said something like “My body doesn’t make insulin anymore like yours does so I need to give myself needles of insulin to help break down the food in my tummy to give me energy. Other than that, I am just like you.”
Wonderful! And — welcome!
I try to use “check” instead of “test” with myself but sometimes I forget. In my job, I provide assessments to students and I have to often correct them from using “tests” because they cannot fail the assessments (that is unless they don’t have a personality!).
I have an admittedly weird opinion on the PWD/diabetic word choice. I was trained in person first language in school, I totally get it. BUT, I think the ending of the word diabetes sounds weird (diabeeteeessss) versus the hard ending of the word diabetic (diabeticK). I know it is hard to explain, but I prefer the way the word diabetic sounds when referring to myself.
That ending sound thing makes sense!