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.
This is an interesting one for me, because I feel different ways about different words, so I'm going to take them into three batches:
The Good: Diabetic vs person with diabetes
This is something that I really don't care about, personally. I've been diabetic/had diabetes since I was four, I've grown up with it and it's part of me. I will refer to myself as a diabetic and I don't really feel anything negative or pejorative related to that. I don't feel that I'm being defined by it, it's just a descriptive term, in the same way that I'm short, Glaswegian, geeky or a scientist. To me, it's just another one of the many things I am. I also lazy, and diabetic is just faster. ;) However, I understand that not everyone feels this way, and it's something that people can feel quite strongly about, so I try to use PWD or person with diabetes whenever I'm referring to someone else and try my best o be respectful of others feeling on the matter.
The Bad: Checking vs testing
This is something that I feel relatively strongly about with regards to how *I* use the words, mainly because I think it does change how I see and react to blood glucose levels. In the same way, I also try very hard to look at the numbers as data, and remove the words "good" or "bad" in relation to what I see on my meter - it's information that's helping me decide what to do next. I spent a long time as a child and teenager getting beaten up emotionally by "bad" numbers on a machine, and I've said before how I think it led to a form of burnout or apathy towards my diabetes care, and I'm trying very hard to change that. Notice I said try ;) I'm better at it that I used to be, but it's still a hard mindset to get out of.
And the Ugly: Compliance
Now this, this is a word I feel strongly about, and I know I'm not the only one. I hate this word, I think it's a bullshit word used by lazy HCPs to dismiss patients who are either not meeting the targets set or not doing things the way the HCP thinks they should. I think it's very easy to just label a patient as "non-compliant" without really going any further or asking the questions that should be asked - mainly why is the patient not meeting targets? Is there something else going on? Are the targets something set by the HCP in discussion with the patient? (and if not, why not?) Does the patient need extra help or education? And a million other things that should be asked. I went to so many clinics as a teenager to be told "your HbA1c is too high, get it lower!) and made to feel like a failure, without anyone ever, ever suggesting anything to help. Additionally, just because a patient is doing things differently doesn't mean it's wrong - maybe you could learn something from them! I've learned a lot from the DOC in terms of different ways of dealing with situations like exercise, spikes after meals etc, and I'm not afraid to try new things - if they fail, fair enough, tweak and try again, ore try something else - but I've heard of people who get labelled as "non-compliant" because they don't just follow the textbook that their doctor is using. It's a horrible, judgemental word, and I hope it gets drummed out of use.