This content originally appeared on diaTribe. Republished with permission.
By Katie Bacon
The parent of a teenager with type 1 diabetes shares her thoughts on calling someone “diabetic,” as opposed to “person with diabetes,” and why language matters when discussing diabetes.
As the parent of a teenager with type 1 diabetes, it has always bothered me when people referred to my daughter as a “diabetic,” but for a long time I couldn’t figure out exactly why. As I thought about it, I realized that when someone used this term, it felt like this was the primary label that applied to her.
“My daughter is a diabetic” sounds fundamentally different to me than, “My daughter has diabetes….” Yes, my daughter has diabetes. And she also loves to run cross-country; she likes studying biology, drawing, hanging out with her friends, skiing, and a lot of other things.
As I delved into this issue, I learned more about a movement established to change the language around diabetes, not just labels like “diabetic” versus “person with diabetes” (which is part of the larger person-first language movement), but words like “control,” “adherence,” “correction” and “good or bad” applied to glucose levels. I also learned, by talking with my daughter and others with type 1, that there’s a lot of gray area in terms of how people think about these words.
For some, including my daughter, it’s no big deal if someone describes them as diabetic. But they don’t want their endocrinologists or diabetes nurse educators to use words that seem to imply judgment or blame. Indeed, researchers like Jane Speight, director of the Australian Centre for Behavioural Research in Diabetes, and Jane Dickinson, director of the Diabetes Education and Management Program at Columbia University’s Teachers College, have argued that the language clinicians use can have direct effects on how people view having diabetes.
In 2017, Dickinson was the lead author of a paper examining the use of language by clinicians in diabetes care and education (Kelly Close, founder of diaTribe, was one of the co-authors). As the authors wrote in the introduction, “How we talk to and about people with diabetes plays an important role in engagement, conceptualization of diabetes and its management, treatment outcomes, and the psychosocial well-being of the individual. For people with diabetes, language has an impact on motivation, behaviors, and outcomes.”
At the heart of the paper is a list of words and phrases that can have negative connotations for those with diabetes, along with explanations of those connotations and suggestions for alternatives. Here’s an example: use “manage” rather than “control,” because “control is virtually impossible to achieve in a disease where the body no longer does what it is supposed to do. Use words or phrases that focus on what the person is doing or doing well.”
I wanted to hear more from people in the diabetes world, to get a sense of how (and whether) the language used about their condition affects them. In addition to Dickinson, I spoke with Jennifer Fletcher, a diabetes care and education specialist in Dallas, Texas, who has type 1 herself, along with her father and her two brothers; Eritrea Mussa, an advocate who has lived with type 1 for 20 years and now works as diaTribe’s social media manager; and Anita Nicole Brown, a diabetes advocate and aspiring actress.
Diabetic vs Person with Diabetes
I started off asking people about their feelings about diabetic versus person with diabetes, since that was the term that has most bothered me as a parent.
The paper in Diabetes Care cites a researcher named Joan Fleitas writing on the power of words in the nursing profession, arguing that there’s a reason that some people are bothered when they are labeled by their disease.
“Defining people by their disease, for instance, ‘diabetic,’ just because it is semantically convenient ought to give us pause. ‘When the words or some disease statement precede the subject of the sentence, an image is formed that prevents the listener or reader from thinking about the subject any other way.’”
Yet when I asked people with diabetes—including my daughter—how they feel about being called diabetic, in general it didn’t seem to bother them. My daughter suggested I was making a mountain out of a molehill—what matters, she told me, is whether you have diabetes, not how you’re labeled.
As Mussa commented to me, “It doesn’t really matter to me, because I still have to live with the disease no matter what, right?”
For Brown’s part, she embraces being called diabetic, as it’s a label that signals, front and center, what she has to overcome every single day (and hour, and minute) to live her life. “For me, it doesn’t take away from what I do, what I’ve been through, what I can and what I cannot accomplish. To me, saying that I’m a diabetic, it tells people that everything I’ve accomplished, I’ve had to accomplish while having this disease and by default it makes me even stronger.”
“How’s your control?”
Another diabetes-ism that strikes the wrong note for me is when people ask something along the lines of: “How’s your daughter’s control these days? Is everything well-controlled now that she’s had diabetes for a while?”
Anyone who’s lived with diabetes, or taken care of someone with it, knows that diabetes can be a capricious, changeable condition where consistent blood sugars can at times be impossible to achieve. So when someone asks me about my daughter’s control, it feels like we’re somehow failing if her control isn’t perfect. It feels to me like her control isn’t really someone else’s business, yet I know the question always comes from a place of concern.
When I asked Dickinson about the question of “how’s her control,” she replied, “Yes, that is absolutely judgmental, because what that question is really asking is, ‘How’s she doing with those numbers? Is she keeping them where she should?”
As Dickinson and her coauthors write in their study, when it comes to diabetes, the idea of control can have a moralistic overtone when someone without the condition asks about it. And the messages around control can be especially damaging when they come from someone’s health care provider.
“The term ‘control,’ when used in discussing diabetes management activities, places responsibility on the person with diabetes while also implying strictly following the advice of the health care professional who holds authority and knowledge…..The frequent reference to ‘control’ in diabetes forms a ‘moral discourse’ surrounding the disease and may elicit feelings of shame. It may be more effective to serve those with diabetes without using language that places implicit or explicit judgment on them or blames them for their health-related problems.”
As Dickinson told me in our conversation, “Somewhere along the line, we forgot about the human factor. And we started talking about controlling diabetes and putting that on the individual. What is that message doing to a person when they’re being compared to a benchmark called control and they can’t control it? It’s not working.”
Good and bad
For some, two other hot button words in the diabetes world are “good” and “bad,” partly because they overtly imply judgment. (The paper in Diabetes Care recommends using the words “safe/unsafe” to refer to blood sugars rather than “good/bad.”)
As Mussa argues, “The word diabetic doesn’t really come with any blame. But words like, ‘Oh, that’s a bad number,’ or ‘That’s a high number’—there’s shame, guilt, and blame laced into that sentence, even if it’s unconscious.”
For Fletcher, when her endocrinologist described her blood sugars as “good” or “bad,” it impacted the way she felt about herself, and made her feel removed and separate from the process of managing her blood sugars.
“As a kid, I would go into my appointments and they would look at my glucometer and my blood sugars and say, ‘Yeah, these are good.’ Or, ‘These are bad, or, ‘We need to adjust X, Y, and Z and you need to do better.’ I always left the appointment feeling depressed, feeling like a failure, and not being given the hope that I can do this. Like here are the tools, here’s the strategy. They could have asked me things like, ‘What are the barriers you’re facing? What goes through your head every day with diabetes?’ No one was asking me that as a kid.”
Anita Nicole Brown has a different view. She argues that sometimes you just have to call something what it is.
“When I was diagnosed, my A1C was almost at 29, okay? Yeah, it was bad. Ain’t nothing you can say that’s good about that. It was something that needed to be resolved. I needed to work on it. So, people may be upset about low and bad and this and that but unfortunately, especially when it comes to health, there are good things and bad things. And we have to be willing to understand and accept those definitions and terms because that’s the only way we’re going to become better.”
For Jennifer Fletcher, both as a patient and as a diabetes educator, language that’s non-judgmental and straightforward works the best. Instead of good/bad, for instance, she, like the authors of the article in Diabetes Care, suggests safe/unsafe.
As she explains, “I truly believe using those words would have prevented a lot of emotional anxiety within myself, and within thousands of diabetics that I’ve counseled as well.”
In her own life as a diabetes patient, Fletcher has come to value those clinicians who work with her and try to teach her about the disease, rather than labeling whether her blood sugars are good or bad. She references an endocrinologist who completely reshaped how she views her condition, one who worked with her as a teacher would.
“He’s the one that after I went to him the first time I said, ‘I will always go back to him.’ Because he did not make me feel like a failure. He didn’t focus on my numbers. He focused on patterns. He would say, ‘Hey, here are the patterns I’m seeing right now.’ He would never say, ‘These are your blood sugars and they’re terrible. And they’re always spiking at lunch.’ He would just draw a little graph on his whiteboard and be like, ‘Hey, here’s where we’re at. And if we could pre bolus right here.’ And he would explain how the insulin action time would work and how it would lower the blood sugars quicker if I took insulin before. And no one had ever sat down and drawn a graph with me or had a five-minute teaching session with me before that. He took the focus off of me and put it all on a whiteboard, which was great for me.”
According to Dickinson, health care providers like the one Fletcher describes—ones who are careful with their language and avoid words like good, bad, noncompliant, and control–should be the standard.
As she puts it, “My goal is for healthcare professionals to take this on and to lead by example and make these changes so that when people are diagnosed five, ten, fifteen years from now, they never hear these words and they don’t get perpetuated.”
Dickinson acknowledges that for those who are living with a chronic disease as all-consuming as diabetes can be, the language used may be low on the list of their priorities. Still, how people talk about diabetes and the people who live with it can have important consequences, she says.
“From what we’re learning every day, the way we talk to people makes a huge difference in the way people feel about themselves and in the way people take care of themselves. It trickles down into health outcomes and mental health outcomes.”
To learn more about diabetes stigma, and how important our language choices are in reducing this stigma, check out our resources on the subject: