Today’s topic: 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?
“You’re not diabetic. You have diabetes.” This is what my mom used to say to me back when I was first diagnosed. I was 12 years old. Honestly at that time, that distinction wasn’t that important to me, or maybe I just didn’t understand the difference. Today, I use the phrases interchangeably, although I get why my mom made the distinction. She didn’t want me to define myself by my diabetes. It was something that I had, not who I was. But while I don’t feel limited by my diabetes, it is a big part of who I am however I say it.
That was the first time I really thought about the nuanced language we use to talk about diabetes. But it wasn’t the last.
It was a few years ago. I was at my endocrinologist’s office for my appointment. My doctor had left the room briefly for something and my chart was open in front of me. I peeked over to see what was on the screen and I saw it: “diabetes mellitus type 1, uncontrolled“.
Uncontrolled?! Who, me?? The person who tries every day to manage my diabetes? The person who is constantly carb counting, correcting highs, and treating lows? The person who is always thinking about diabetes is uncontrolled?! What?!
It was such a slap in the face to see those words on the screen. I was sad and angry and confused. I felt like I had been incorrectly labeled…and judged. I felt like I wanted to write a paragraph explanation next to that word for whoever might read it. Why couldn’t it say something like, “Engaged patient, making progress, but room for improvement”? I know now that what I saw was part of the ICD-9 codes for billing purposes. And yes, at the time my A1c may have been higher that I’d like. But the fact that my struggles and effort of living a normal life with such a challenging chronic disease had been reduced to that single word was demoralizing.
I’ve since checked the codes that my doctor used, and I haven’t seen uncontrolled used again. But I’ve never been so angered and hurt by a word used to describe me and my diabetes. Even though I wasn’t necessarily meant to see what was written and it wasn’t a word that my doctor ever used directly with me, it demonstrated the power a single word can have and how important it is to be cognizant of the language we use when speaking about and describing diabetes. You never quite know the effect it may have.
Type ONEderful 
Wow – great story about the impact that others’ language can have. Someone else wrote that language reveals attitudes and that one word reveals a lot. Of course insurance and billing is a completely different topic for a different day! I’m glad your doctor didn’t use “uncontrolled” when working with you directly!
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Language! So interesting, also something that frequently comes up in mental health.
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Yes! I think seeing uncontrolled hurts worse than any other word when it comes to diabetes…everyday is a struggle. Seeing the uncontrolled is just a nasty reminder.
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oh yes! good point. i remember a doctor asking me if i considered my diabetes controlled. i’m always TRYING. the question seemed judge-y. And sort of like a trick question.
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i’m trying again with my REAL account info….
oh yes! good point. i remember a doctor asking me if i considered my diabetes controlled. i’m always TRYING. the question seemed judge-y. And sort of like a trick question.
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Great perspective. I feel uncomfortable when people ask me if my diabetes is under control. If only it were that simple.
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Firstly, thanks so much for being so open about everything here on your blog!
Secondly, I am currently job shadowing a Physician Assistant who is a pump specialist at the hospital where I see my endocrinologist. Looking at patient’s charts, that word also popped out at me, and I had the same reaction that you did! The words “controlled” or “uncontrolled” that were designated to different patients didn’t seem to reflect their quality of life, nor how much effort they were putting in to maintain their health.
I didn’t really like those words too much, and as a T1D myself I wondered what my chart said about whether I was controlled or not.
But when I asked the PA about it, she told me it’s really just a standard to go by, and the healthcare professionals in the facility didn’t really put too much weight on it. And that even though they had those designations, every patient is different and has different goals.
So IDK if that’s helpful, but again, thanks for sharing!
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