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.
Language is so important, in all its forms. At risk of delving back into my Language Analysis lessons (if my Year 10s hear me say “…but how is that persuasive?” one more time they’ll probably stage an uprising), one word can change the entire meaning of a sentence, and can create incredibly strong emotions. In terms of diabetes, I agree that there is a real need to use “non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes”. Check out the Diabetes Australia Language Position statement if you’re up for five pages of interesting reading – BUT I appreciate that not everyone is as language-nerdy as me (What do you mean, you don’t want to read a 500 page book about the power of language? What do you do for fun then?) SO instead I’m going to summarise my favourites really quickly for those of you who read my blog who don’t have diabetes. Think of this as a ‘go-to guide’ for talking about diabetes. For those of you who do have diabetes, where do you stand? Do you agree with the popular opinion on the type of language that should be used? Sometimes I don’t!
Before I start though, I want to make something very clear. Language is a personal choice. What works for one person with diabetes may not work for another. When in doubt, ask before speaking! If we call you out on your language – take it and learn from it. It’s not your place to dictate our condition and how people talk about it.
Diabetic: Try person with diabetes instead . This word irks a lot of people with diabetes, as many people feel that it’s this massive label stuck on us – you’re a diabetic, and nothing else. However, I feel differently – sort of. I refer to myself as a Type diabetic when I’m talking about ME, and nobody else. The only person allowed to refer to me as a diabetic is me. This is simply classic Australian linguistic laziness – who can be bothered with seven syllables when you can say it with five? I have started saying this less though, as I heard some nurses talking about ‘the diabetic in bed 5’ when I was last in hospital and it really bugged me. Am I a hypocrite? Absolutely, deal with it.
Testing: A test has negative connotations, and sometimes our life feels like a test that we’re constantly failing – “Why are your numbers all over the place? Aren’t you trying? You need to test more!” Trying hard does not correlate to perfect numbers with diabetes. I can try as hard as I want, but sometimes my pancreas just likes to get hectic and fuck things up. Try check, because that’s what it is. We’re just checking, dosing insulin, and getting on with life. You can’t pass or fail diabetes – you just live with it.
Compliance: OH MY GOD I HATE THIS ONE SO MUCH. A lot of my nurse friends use this one, so I’m guessing it must still be taught in university. STOP USING IT. WE CALL THIS THE “C” WORD. I’ve called a few of my friends out on this (some I’m still summoning up the courage to say it…), and I will not stop. Your relationship with someone who has diabetes is different, you are a team, not a parent telling a child what to do. A toddler refusing to go to bed is non-compliant, a 24 year old woman who is struggling to get her sugars under control is simply struggling. “Compliance” infers that we have no input into the decisions we make every day, when the complete opposite is true. How many people do you know that would make up to 100 decisions a day about their health? It also implies that we are uncooperative, and doing this on purpose. No one with diabetes wakes up in the morning and thinks “I’m going to screw up my body today!” – there is ALWAYS a reason that something is going on, so investigate! You are a team, so try inclusive and collaborative language – “She’s struggling mentally, so we decided to do minimal testing and go back to set dosing” instead of “She’s non-compliant and SO annoying, so I told her to just try testing 4 times a day with set doses.” This also goes for statements like “I’m treating this patient”…NO. You’re not stitching me up or inserting a port. You are working with me. This implies that I have no active say in my disease, which, as outlined above, is 100% false. I am an expert in my diabetes, and you are the HCP who I collaborate with to try and manage it as best as I can.
Poor control: This is judge-y as hell. “Poor control”, “good control”, “excellent control” – since when were blood sugars a moral judgement? I still remember hearing the nurses at handover one night saying “She has terrible control”, and crying quietly to myself as they left. I’m not a terrible person, and I didn’t decide to have diabetes that refuses to play by the rules. What was hard about saying “She’s struggling with her management”? Language has so much more power than you think it does! What’s more, “diabetes control” in itself is an oxymoron. Diabetes is not something you can control, it’s something you can attempt to manage. As stated above, sometimes diabetes just likes to play dirty and there’s nothing you can do about it. Theoretically, ‘controlling’ blood sugars is great, but diabetes is never a simple equation of check, dose, go. If you set yourself up to control it, you will ALWAYS be disappointed, as it’s impossible. Just take every day as it comes, and try to manage or influence those pesky BGLs.
Honestly, the most important thing to remember is that language is powerful, and language reveals attitudes. We are not being needlessly nit-picky – diabetes affects every single part of our life, and as human beings we deserve to be talked about with respect. If you don’t respect the person in bed 5, you don’t deserve to be working with them. Is that too strong a statement? Maybe (not really). But just as I would never use stigmatising or judgemental language about a student, I hope you would never use that language about me. The minute I find myself using this sort of language about my kids, is when I need to leave teaching, and I think that should go for anyone who works with people with a chronic illness as well. The way that someone talks about diabetes is important, and acknowledging our expertise in our own disease is the first step to developing the collaborative healthcare system that is so needed in the chronic illness area.
Of course language changes over time, that is the incredible thing about it! What was appropriate ten or twenty years ago may not be now, and it’s our responsibility as world citizens to ensure that we are respectful to each other as we possibly can be. If you reflect on your language, learn from us and respect us, we can work together to ensure that there is no more of this resentment between both parties. Take language seriously – it’s personal and so is diabetes.