Life with a chronic illness mandates an ongoing relationship with health care professionals. Whether it’s an endocrinologist, diabetes educator, primary care doctor, nutritionist, or all of the above, a person with diabetes gets accustomed to having their A1C, blood, urine, feet, eyes, and more evaluated on a regular basis. These appointments are meant to monitor, manage, and support the person with diabetes, but all too often, they leave that person feeling judged and shamed.
According to “The Use of Language in Diabetes Care and Education,” published in the journal Diabetes Care, “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.”
Words such as “noncompliant,” “control,” “good” or “bad” numbers, and “testing” used in discussions about an individual’s management of diabetes can be detrimental to self-care. They also imply that diabetes can be “controlled,” ignoring the many variables that contribute to clinical outcomes, and the daily efforts people make to incorporate the demands of diabetes into their lives. It’s imperative for health care professionals to understand the nuances of language, which begin with describing someone as a person living with diabetes, not a diabetic. The goal is to use language that is neutral, nonjudgmental, and based on facts, actions, or biology.
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Ana Morales has lived with type 1 diabetes (T1D) for nearly 30 years and says she always dreads her appointments with the endocrinologist.
“Even when my diabetes management is pretty good, it never feels good enough,” she says. “I can’t count the number of times I sat in an office feeling ashamed as my doctor listed the things I needed to do better, or not do at all in order to maintain good health. I had an endocrinologist in high school who was pretty dismissive — he kept visits very short and never talked to me about my mental health, and I just felt so guilty about not being able to take better care of myself.”
When people with diabetes feel that their health care professional is not on their side, they are more likely to stop confiding to avoid judgment and negative reactions; some stop attending appointments altogether. “Indeed, while disengagement from health care can lead to high HbA1c levels, the opposite may also occur, whereby a high HbA1c level is the precursor to disengagement because of fear of criticism,” says “The Language of Diabetes: The Good, the Bad, and the Ugly,” in Diabetic Medicine.
Progress in the research and development of technology for people with diabetes has soared in recent years, but the language has remained stagnant. Researchers have been documenting the effects of the language of diabetes, but widespread application in both health care and the general public has been marginal. Lauren Plunkett, RDN, CDCES, registered nutritionist (RDN), certified diabetes care & education specialist (CDCES), public speaker, fitness instructor, and owner of LP Nutrition Consulting, has lived with T1D for more than two decades and is an advocate for strengths-based language and person-centered care.
In her role as a diabetes educator and nutritionist, Plunkett works to empower her patients using optimistic coaching. “We have to see the patient as a person,” says Plunkett. “Building trust and working together is the only way to achieve the clinical outcome. The medical community needs to be retrained on changing communication styles. It needs to start in medical school.”
When Heather Jacobs was diagnosed at 8 years old in the late 1970s, she remembers the doctor talking over her, not to her, and listening as he told her parents about eventual complications. They were told their daughter’s life expectancy was 40 years old as a child with “brittle” T1D.
“I felt defeated before I even began learning how to give myself an injection. From that day on, every appointment left me feeling judged and shamed when my HbA1c levels were “bad.” I was simply “noncompliant.” I always thought, what’s the point? Why should I try to do what my doctor tells me because I’m going to die a young miserable death anyway?” says Jacobs.
Plunkett’s article “Why Language Matters in Caring for People with Diabetes” discusses the importance of connecting with patients on a personal level. “Psychosocial well-being of the individual hinges on nonjudgmental language from the moment of diagnosis. Connecting to patients on a personal level while guiding them through the challenges of chronic disease is key to acceptance and progress.”
Health care providers aren’t intentionally shaming their patients. “Time constraints, technology, and administrative demands of modern medicine often impede the human connection that is central to clinical care, contributing to physician and patient dissatisfaction,” notes the article “Practices to Foster Physician Presence and Connection With Patients in the Clinical Encounter” in the journal JAMA. Nonetheless, research shows that this dynamic endures. It took almost 20 years before Jacobs found an endocrinologist who “saw me as a human. I felt heard and understood for the first time.” These experiences made such an impression on her that she started her own health and wellness coaching business to help others.
Change is possible
The good news is that changing the dialogue between health care providers and their patients is within reach. The simplest way to engage and empower people with diabetes starts with language. Studies suggest that patient centered care and “motivational interviewing” are effective and support the patient’s self-efficacy. This style of communicating requires that health care professionals follow four principles: genuine expression of empathy, development of discrepancy between the patient’s current behavior and his or her treatment goal, rolling with the client’s resistance, and support of the patient’s self-efficacy-reflective listening, using “open” questions.
Change must also come from within, and a person with diabetes is often the best advocate for change. Individuals who see their doctors as members of their team and come to appointments prepared are more likely to walk away feeling empowered and informed. Ann Rosenquist Fee was diagnosed with T1D by her OB-GYN when she was 25 years old. The appointment was scheduled as a pre-pregnancy checkup, and when the doctor discovered that her blood glucose levels were in the 400s, she sent her to the hospital. Fee had the misfortune of meeting with a doctor who told her women with T1D who were at greater risk for a still birth. Losing both her identity as a healthy person and her future as a mother in the same day was devastating.
“I was sobbing. Thankfully when the nurses came into the room and I told them what happened, they said I was given the ‘vintage’ definition of diabetes and pregnancy. They assured me that women with T1D can get pregnant and become mothers,” says Fee. “It was a really formative moment because I learned that the first answer is not always the right answer. From that day on, I always questioned the information I was given in the doctor’s office. I had to educate myself in order to advocate for myself with health care professionals.”
In “Narrative Medicine: Honoring the Stories of Illness,” Rita Charon writes, “A medicine practiced with narrative competence will more ably recognize patients and diseases, convey knowledge and regard, join humbly with colleagues, and accompany patients and their families through the ordeals of illness. These capacities will lead to more humane, more ethical, and perhaps more effective care.”
A taskforce consisting of representatives from the Association of Diabetes Care & Education Specialists (ADCES) and the American Diabetes Association (ADA) convened to develop these guidelines using four guiding principles:
Want to learn more about making the most of your medical appointments? Read “Five Tips for a Diabetes Doctor Visit,” “Seven Tips for a Successful Doctor’s Visit,” and “Planning for a Successful Doctor’s Visit.”