By Dr. Seema Nagpal and Amanda Sterczyk
Words matter. Language has impact. It can leave a profound mark on our thoughts, feelings, behaviours and experiences. For people living with diabetes, hearing the wrong language negatively impacts their self-efficacy and well-being. It can also undermine their experiences with the health-care system and their self-care. The language used when communicating with and about people with diabetes contributes to diabetes stigma and stereotyping.
Stigmatizing language is often used when talking about diabetes, both by health-care providers and the public. This is in part due to the risk factors of an unhealthy diet, insufficient physical activity, the association with being overweight or obese, and the myth these factors are well within a person’s control. People diagnosed with type 1 diabetes get lumped into this same mythology, adding to the public’s confusion and lack of understanding of diabetes. Other terms and phrases make people living with diabetes feel like they are not trying hard enough or failing to look after themselves. Sadly, it’s been reported some of these inaccuracies are spoken to them by health-care providers. A study on diabetes stigma conducted by the American Diabetes Association concluded that most adults with diabetes (type 1 or type 2) felt stigma associated with their disease. In addition, they perceived this stigma to be associated with uncontrolled diabetes, higher A1C levels, higher BMI, glucose not within target range, depression, and greater therapy intensity.
For a person living with diabetes, the use of insensitive language by health-care providers can lead to feelings of shame and guilt and perpetuate a mendacious relationship between health-care providers and the person receiving care. It can make people feel unwelcome or unsafe. People who are ashamed of their disease will find it much harder to engage with their healthcare team, negatively impacting their physical and mental health outcomes. Language that focuses on “suffering” or “battling” diabetes frames those living with the condition as fundamentally flawed and helpless. The terms “non-compliant” or “adherent” do not consider the fact that life events or financial constraints can impact a person’s ability to manage their blood glucose; diabetes can be unpredictable and given the progressive nature of the disease, it can be harder to keep blood glucose levels within target range over time.
Although the language used in the care of those living with diabetes can have damning and negative effects, the good use of language can promote and encourage positivity and, subsequently, better health outcomes. People living with diabetes deserve to be spoken with and about in ways that are respectful, inclusive and value based. A guide developed by NHS England sets out practical examples of language to encourage positive interactions with people living with diabetes. These examples are based on research and supported by a simple set of principles for good practice for interactions between health-care professionals and people living with diabetes.
In 2020, Diabetes Canada released Language Matters – A Diabetes Canada Consensus Statement to facilitate positive and affirming attitudes towards diabetes, reflected using more appropriate language around diabetes. An important facet of creating a positive environment is framing discussions in ways that focus on empowering messages and people’s strengths. When a health-care provider refers to a person’s glucose levels as being “poorly controlled”, the person living with diabetes hears “it’s my fault”. If the wording is switched to refer to glucose levels “outside the target range”, the conversation moves beyond blame and shame.
How we use language goes beyond caring for people with diabetes. A recent paper in The Lancet explored the importance of language in decolonising global health. The terminology used in referring to global health challenges, writing research questions, papers, teaching students, working with research participants and the public can help shift the power dynamic in a positive way.
Diabetes Canada hopes greater attention will be given to the language used when speaking of diabetes, and in turn, contribute to enhancing public understanding of diabetes, its complications, decreasing the stigma, stereotypes and prejudices associated with it. This will contribute to improving the mental, emotional and physical wellbeing of the nearly 11.5 million Canadians living with diabetes and prediabetes.
Dr. Seema Nagpal, Ph.D. is Vice President of Science & Policy for Diabetes Canada. She has expertise in population health, epidemiology, and pharmaceutical sciences with an emphasis on interpretation of science into policy and practice. Amanda Sterczyk, MA, is Manager of Research & Public Policy for Diabetes Canada. She has a background in health promotion research and has been a primary caregiver to her daughter with type 1 diabetes since 2011.