There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.
Terms aren’t quite as important to me as I thought they would be. I always say I have diabetes, not I’m diabetic. I prefer PWD, but diabetic isn’t so terrible either.
Here’s what I think is really important about language and diabetes: placing blame. The words “control” and “non-compliant” are particularly difficult. I can “comply” all I want, but if I don’t have a doctor who encourages me to make adjustments to insulin/carb ratios, basal rates, and correction factors, and if that same doctor won’t make adjustments themselves, I’m not going to see in-range BGs. Complying with a treatment plan that doesn’t work for me doesn’t do much for anyone. I can try as hard as I want, but diabetes isn’t something we can just “control.”
I know a lot of people suggest “management” as an alternative for control, and I guess that’s better. I still feel like it leaves a lot of room for blaming the PWD for not managing things that are outside their control, though.
There has to be a better word than “non-compliant” for someone who can’t afford their medication or supplies, who just can’t look at one more BG number, who’s digging themselves out from diabetes burnout, who got the flu, which led to DKA. What if we just talked about the numbers? “This patient has an above-range A1C.” “This patient’s BGs have been above their target for several days.” Why do we need to describe them as a person, rather than the constantly changing numerical measurement of their disease?
I know lots of medical professionals don’t perceive PWDs with high A1Cs as irresponsible even if they use the term “non-compliant,” but lots do. The term isn’t helping to end things like doctors, nurses, RDs, etc. thinking that there are “good diabetics” and “bad diabetics.”
When someone has cancer that doesn’t respond to treatment, we don’t say that person is non-compliant. When someone has Celiac disease and tries as hard as they can but gets gluten from cross-contamination in a factory or a restaurant kitchen, we don’t call them non-compliant. Even when someone who takes pain medication as prescribed ends up going down a path he don’t want, we look at how doctors can do better. How we can make safer rules to keep things like that from happening. I’m awfully thankful not to be in any of those situations and certainly don’t want to compare myself to someone struggling with another disease, but I do want us to think about how we see diseases.
Bodies fail. That’s how we got here. I wish we would talk about the scary diabetes moments as body failings, not personal failings. It’s so much harder than you think if you’re not doing it every day. It’s so much easier to make a mistake than you could ever imagine.