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Our words — the way we speak, and are spoken to, what we read, and what we write — create our reality. The words and phrases used in relation to diabetes influence how people with diabetes think about themselves, and how society views people living with diabetes.
Almost 1.5 million Australians live with diabetes. Most (87%) live with type 2 diabetes (T2D). The remainder live with type 1 (T1D; 9%), gestational diabetes mellitus (GDM; 3%) or other types of diabetes (1%). Many more Australians are at increased risk of developing T2D and/or GDM, and all types of diabetes are increasing in prevalence. This is due to a complex interplay of genetic, biological, environmental, sociocultural and behavioural factors and social inequities influencing health. Yet, public discourse and media portrayals of diabetes often focus on individuals’ responsibility for the prevention and management of diabetes, and the burden on the health care system.
Within health care practice and research, phrases like “failure”, “(poor) control”, “(non-)compliance”, and “lifestyle disease” are pervasive in relation to diabetes. This type of reductionist, simplistic and inaccurate language reinforces diabetes stigma and discrimination, that is the negative social judgements, prejudices, and unfair treatment of people living with diabetes. Diabetes stigma affects the way people with diabetes think, feel and act. It is associated with impaired emotional wellbeing, diabetes self-management, clinical outcomes, and access to health care. So, it is critical that we understand the impact of common words and phrases used in conversations with, and about, people with diabetes to ensure our language conveys inclusion, care and support, and not misconceptions, assumptions and harm.
Studying the language
A new study, conducted by researchers at the Australian Centre for Behavioural Research in Diabetes (ACBRD), has explored the power of language in diabetes care. Funded by Diabetes Australia, researchers surveyed 747 adults with diabetes (T1D: n = 519; T2D: n = 180; other types: n = 48), plus 118 parents of a child with diabetes. The survey asked participants to rate the acceptability of 22 words commonly used in communications about diabetes, as well as their perceptions and emotions in relation to those words, and to describe the impacts of such language on them. Researchers collated the data and analysed the written responses using thematic analysis.
Overall, several words and phrases were commonly associated with negative responses. These include referring to diabetes as a “disease”, a person with diabetes as “non-compliant”, and diabetes management or glucose levels as “good” or “bad”. In contrast, several terms were rated positively, including referring to a “person with diabetes”, to diabetes as a “condition” that can be “managed”, and referring to glucose levels as “within” or “outside” target range. Participants indicated that such language fosters hope, and supportive, trusting relationships with health professionals. Qualitative responses highlighted the way language contributes to their experiences, including the powerful impact that empathic positive interactions can have on their wellbeing and conversely, concerning accounts of diabetes stigma, disempowerment within the health care setting, and disengagement from health care.
This is the first empirical survey to explore experiences of diabetes-related language in Australia. It offers rich descriptions of the impacts of language used in diabetes. Although this study offers insights into preferences for person-first, non-judgemental language, further research is needed to explore the preferences of sub-groups who were not well represented in this study, including those potentially more vulnerable to social and health care inequities and discrimination.
#LanguageMatters
Since Diabetes Australia’s world-first position statement on the language used in diabetes care more than a decade ago, numerous position statements have been published across the world. This has been propelled by a growing community-driven international #LanguageMatters movement, which advocates for the use of person-first, strengths-based and non-judgemental language in diabetes-related communications. This latest evidence highlights that such position statements reflect the ongoing unmet needs of people living with diabetes in Australia.
People with diabetes want conversations that offer optimism and hope for those currently living with or at risk of developing the condition. Although many instances of judgemental, offensive language may be intended to motivate health behaviours, the use of scare tactics and language that blames and shames is more likely to do harm than promote positive change. In health care, we need to avoid words laden with moral judgements (like “good/bad”, “compliant/non-compliant”, “well/poorly controlled”) and retrain ourselves and colleagues to use simple, factual and neutral language that conveys health messages effectively and respectfully.
Encouragingly, this study suggests that the use of more acceptable and non-stigmatising language has the potential for wide-reaching positive impacts on people living with or at risk of diabetes, including reducing diabetes stigma and promoting positive wellbeing. Further, using person-first, supportive language and acknowledging the challenges and efforts involved “puts the person with diabetes in the driver’s seat” to guide their self-management of their diabetes and their overall health. It is everyone’s responsibility to adopt the preferred diabetes language in spoken and written words. Every small positive change, within health care, education, media, and public discourse will contribute collectively to much-needed systemic change.
For practical suggestions and changes that can be implemented today, check out our published paper and Diabetes Australia’s Language Position Statements, and consider taking the Pledge to End Diabetes Stigma and Discrimination.
Jane Speight was an author of Diabetes Australia’s inaugural position statement on the language used to communicate with and about people with diabetes in 2011, and Jane Speight and Renza Scibilia were authors on the 2021 revision. Renza Scibilia is an author of the Language Matters Pocket Guides. Eloise Litterbach, Elizabeth Holmes-Truscott, and Jane Speight are employed at the Australian Centre for Behavioural Research in Diabetes (ACBRD), with core funding derived from a collaboration between Diabetes Victoria and Deakin University. Renza Scibilia was previously employed at Diabetes Australia. The ACBRD has received both competitive research grants and unrestricted educational grants from Diabetes Australia. Diabetes Australia provided input into the design and conduct of the study reported here, but was not involved in the analysis, interpretation, or publication of findings. Renza Scibilia has lived experience of type 1 diabetes, and Elizabeth Holmes-Truscott has lived experience of gestational diabetes.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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