My six year old daughter, newly diagnosed with Type 1 diabetes, was sitting on our sunny front porch, casually checking her blood sugar (because you know, six year olds are pretty casual about medical intervention, right?) when a good friend and neighbor walked up, watched her check, smiled, and said “Oh! 192. Is that good or bad?”
Without missing a beat, my daughter schooled that neighbor on the nuances of diabetes language. “Numbers are not good or bad, Mrs. Neighbor. They are simply high or low. They are information. We don’t say ‘good’ or ‘bad’ here, okay?”
In life with diabetes, language can mean so very much. “No judgment, no blame,” was one of the most important things we learned from my daughter’s medical team.
I’m sure I slipped over the years, but I’ve done my best to be conscious of the language I use to talk about diabetes. It goes way deeper than good or bad. And there are phrases we all use that I wish we’d strike from our diabetes vocabulary. Here are a few:
“He’s a rebellious teen.” When a teen (or anyone else for that matter) nosedives in their daily diabetes care requirements, it’s not always “rebellion.” Actually, it almost never is. My child struggled as a teen. But while her diabetes care suffered, the rest of her life was charmed. She was student body president, on the homecoming court, and in charge of prom, just to name a few things she was into. She did public speaking (Even before Congress and at the DNC). She was nice to small animals and helped old ladies cross the road. She just happened to not be in synch with her diabetes.
Calling her “rebellious” was like putting that letter jacket on George Costanza and labeling him a “bad boy.” I hear parents say it all the time. “My child is rebellious.” When I ask them about the rest of the child’s life, I point out that the rest of their life does not sound rebellious (sometimes, rarely, it does, and that usually is truly a case of a rebellious child, unrelated to having Type 1 diabetes). Why does this matter? Because it’s discounting what the child is feeling in his or her head. And what they are feeling is this: struggle. Hard, disappointing, life-sucking struggle. They don’t need to be guided in the same as a rebellious child does; they need to be comforted and guided. Call them rebellious and they feel judged as an entire person for something that’s just one small part of what they do and who they are. Rebellious is a label and usually not one that matches what is going on with a child struggling with their diabetes.
“Diabetes never gives me a break. Never!” This only goes to the parent or loved one, not the person with diabetes. Listen, as much as this consumes us, every single of us who does not have diabetes actually does get breaks. We may not notice them and sometimes they may seem short and almost intangible, but we have moments without it weighing us down. A young woman I know recently attended a meeting of parents of children with diabetes group. When a mother complained about not having any time off, my friend snapped and said, “You know what? You do get a break. You don’t know what it is like to have diabetes keep on keeping on when you sleep, when you wake, when you watch a movie, when you do anything. I appreciate that you work hard for your child—I do! But you do actually get a break.” She said they almost threw her out the door. I say bravo for that dose of diabetes language reality.
Well taken or not, her point was on point. Plus, messaging that you see diabetes that way – even if you think you’ve never said it in front of your child – is only going to heap guilt on them. Their diabetes is consuming mom or dad’s life. It’s their fault mom or dad is exhausted. They are a burden.
If you really feel that way, there are things you can do that may lessen the burden. You can find something else to do (even if it is just an hour twice a week), and talk to a therapist about finding ways to make your life more manageable. You do get breaks. You just need to find them and then use them in a quality way.
“I only want a biological cure. I don’t care about anything else.” Unless you are using one shot of ultralene a day via glass syringe, boiling urine for random glucose tests and not having labs like A1c’s drawn, you are full of baloney. OF COURSE everyone wants a biological cure – it’s madness to think otherwise. But saying you don’t care about any other advances while you’re actually using those advances in daily living is…. duplicitous. Stop saying it. Instead, say, “I love funding the biological cure science because I know others are funding the other breakthroughs. I’m thankful for those as well.” It is okay to support any kind of research you want – there’s room for all of us here. But before you say you don’t care about funding treatment/technology research, be sure you actually mean that.
“I’m off to get my diabetes report card.” An A1c is an amazing look into what has been going on in the body of the person with diabetes for the past (usually) three months. It is used to make plans, figure out changes or keep things the same. Period. It’s not a report card or a judgment. I recently decided that, if I had to do my daughter’s childhood with diabetes to do over again, I’d not even tell her what an A1c was until she was quite a bit older. Why does a child even need to know? Isn’t it enough to say “you’re doing great. We’d like to check you two more times on Saturdays, okay?” Like many adults with diabetes, my daughter still dreads getting that A1c done – something people less developed countries would give anything to have. Why does she? Because my language messed with her head. Shame on me for having made it a judgment moment that comes back over and over again in her life.
“I saved her life with that juice box.” Listen: I’m sure it was late at night or right in the middle of her playing in the yard or at a moment in time you don’t usually think to check blood sugar, but… Saying you saved your loved one’s life (unless you did CPR, called 911, did the Heimlich or such) isn’t the best idea if what you did was simply (and wonderfully, lovingly get juice or glucose of some kind for them when low.
Here’s why: First, you probably didn’t actually save their life in that moment. Well, not any more than we all do each morning when we feed our children breakfast and save them from starving to death. Giving someone glucose or checking for a low you suspect it, is simply finding a low and correcting it. Why is this important? Because when children hear you say that – and even if you think they don’t hear you, they do because kids are sponges – you are instilling fear in them. You are saying that had you not intervened, they would have died. That’s not good for a kid’s sense of safety and well-being.
It also sends a message to the world at large that our loved ones with diabetes are in imminent danger. For those of us who remember the days of rampant discrimination against people with diabetes, this is a real concern. Look: if the neighbor mom thinks your child almost died at night or in the yard or on his bike all of a sudden, she’s going to be hesitant to have him over to play, much less sleep over. And if the world thinks people with diabetes are just one blood sugar check (or CGM misreading) off from death, they might subliminally not want to, oh say, hire them for a job. (Of course this is illegal. But it happens.)
Why not just say what happened? “Her blood sugar was low so I got her some glucose tabs. She ate them. Then she wasn’t low anymore. Life went on.” I know – it’s not as dramatic and it does not help gain sympathy for our plight (and we do need people to care), but if the language we use to help research progress actually regresses us in our day-to-day lives, what’s the point? There’s no cure for diabetes yet, but there is a cure for misunderstanding. It comes with language.
Great article. I agree 100%