Sticks and stones may break my bones, but words will never hurt me. But language can perpetuate diabetes stigma — and you have control over the narrative.
Words can and do hurt, especially when it comes to perpetuating diabetes stigma. Stigmatizing language can be anything from name-calling to accusing someone of not taking proper care of themselves to telling a bad diabetes joke. In the doctor’s office, it can be labeling someone as noncompliant, out of control, or bad.
These are all examples of how people with diabetes are stigmatized by the words we hear and use. Every one of them leaves a sting. Worst yet, stigmatizing language can undermine a person’s self-confidence and ultimately their ability to effectively manage their diabetes.
In recent years, we’ve seen diabetes advocates and allies actively work to change the words we use in diabetes care. Advocates have raised awareness, suggested new vocabulary to combat stigma, and empowered people living with diabetes. Research papers and guidelines have been published. Awareness campaigns have been launched around the world. And people are adopting new language practices that counter stigma with empowerment.
Stigma happens when a person feels excluded, rejected, blamed, or a target of prejudice because some characteristic they have is perceived as different from the norm.
Diabetes stigma is behind all the bad jokes about how eating too much sugar causes diabetes. Stigma is behind being questioned about whether you can eat something or not.
It’s about being accused of not taking good enough care of your health to avoid diabetes. In other words, stigma is saying having diabetes is your fault.
Stigma has also been institutionalized in the language used in healthcare. The word diabetic is a way of labeling people and setting them apart. The labels compliant and noncompliant are steeped in judgment. Calling it blood sugar, instead of blood glucose or glucose, reinforces the notion that sugar (and not insulin resistance) causes diabetes.
According to dStigmatize.org, an initiative that’s part of the diaTribe Foundation, 52% of people with type 2 diabetes report experiencing diabetes stigma.
Diabetes stigma is everywhere. It surrounds us.
How we talk about diabetes reinforces stigma. There’s a direct connection between the language used and perpetuating stigmatized images of diabetes. The words we use don’t just reflect reality — they create our reality.
Stigma is a type of rejection or judgment. For people with type 2 diabetes, stigma often comes in the form of comments that blame or criticize the person for their condition, actions, or habits.
These comments are often framed as “for your own good” or a way “to motivate you to take better care of yourself.” Instead, they just drive fear, embarrassment, guilt, anxiety, and low self-esteem. In turn, these feelings can lead to depression and stress, undermining a person’s ability to engage in the very behaviors they need to manage their diabetes self-care.
According to dStigmatize.org, 81% of people with type 2 diabetes feel as though others believe diabetes is a character flaw or a failure in personal responsibility. And 22% of respondents reported that stigma has impacted their diabetes management.
These impacts play out in many ways. For example, when a person with diabetes feels too ashamed to check blood glucose levels in front of others, they might skip this important step in diabetes self-care when eating out or at a friend’s house.
When a person with diabetes is afraid that their doctor will scold them, they might avoid scheduling their labs or checkup. Or, worse yet, they might feel that they can’t be completely truthful when talking with healthcare professionals. These are the kind of protective yet misguided actions that can result from the sting of stigma.
The Association of Diabetes Care & Education Specialists (ADCES) developed a diabetes language guide, which aims to foster a more respectful, inclusive, and person-centered approach to diabetes care and how diabetes is portrayed in the press. They recognized that stigma has historically been part of healthcare and believe that health and well-being will be enhanced by using language that is person-first, strength-based, and empowering.
This new diabetes language starts by referring to the patient as a person with (or who has) diabetes instead of as a diabetic. Using the term “person with diabetes” avoids putting a label on that person and moves away from language that characterizes them as abnormal.
For example, when referring to people:
|Say this||Not that|
|person with diabetes; person living with diabetes||diabetic|
|person without diabetes||a normal person|
The guidance goes on to suggest using more empowering and affirming language when talking about diabetes care. Instead of using judgmental terms, the guide suggests language that more accurately reflects the person’s efforts and results.
Instead of saying good or bad control, say the person’s glucose levels are or aren’t within their target range. Control, itself a stigmatizing term, doesn’t accurately represent the person’s efforts because glucose levels aren’t completely within a person’s control.
Instead of labeling a person as compliant or noncompliant, talk about the things they’ve done well in managing their diabetes and the challenges they face. Perhaps the person takes their medication as prescribed, but they find this difficult when they can’t get their prescriptions refilled on time.
When discussed this way, the challenge to solve is getting prescriptions filled on time. There isn’t an assumption made that the person is willfully not taking their medication.
When discussing managing diabetes:
|Say this||Not that|
|engaged (Describe the actions the person is taking and any barriers they’re facing, i.e., taking medication daily when able to afford a prescription or checking glucose levels before meals when at home.)||compliant or noncompliant|
adherent or nonadherent
|manage (Describe the actions the person is taking to manage their diabetes and their results.)||control, good control, poor control, uncontrolled|
|in/outside target range (Describe where glucose levels are in relation to the person’s individual targets and without a good/bad judgment.)||good/bad/poor (when referring to glucose levels)|
|Glucose levels||blood sugar, sugars|
We can’t underestimate the impact words have on our diabetes care. Whether we’re talking about our own experiences with diabetes or diabetes in general, when we consciously choose empowering language, we combat stigma and build our own confidence and self-esteem.
Ultimately, this strengthens our ability to manage our diabetes more effectively. Let’s take control of the narrative around diabetes by choosing words that don’t hurt.
Medically reviewed on June 16, 2023
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