As evidence and community perspectives evolve, we continue to reflect, adapt and advocate for language that respects and supports all people living with diabetes.
By Elizabeth Holmes-Truscott, Meaghan Read, and Jane Speight
“Words are, of course, the most powerful drug used by [hu]mankind” Rudyard Kipling
Just like the diabetes treatments and technologies landscape, the diabetes language is continually evolving, guided by new evidence, insights from other areas and, importantly, lived experience perspectives. As we work to make therapies safer, more effective, and more person-centred, we must also ensure our words do more good than harm.
Today, we reflect on diabetes words and phrases once widely accepted that we now understand differently. We ask: What’s changed, and what still needs to change?
Where have we come from?
In 2011, the first Diabetes Language Position Statement was published in Australia. It was a pivotal moment in recognising how words can either support or stigmatise people with diabetes. This statement, and the 2021 update, offered practical guidance on how to talk with and about people with diabetes in ways that affirm dignity, avoid blame, and promote person-centred care. It also introduced the idea that language matters not just in clinical settings, but across the media, policy, education, and public discourse.
But this wasn’t the beginning. Long before 2011, people with diabetes, health professionals, and researchers alike had already begun challenging terms (and underlying assumptions) like compliance, adherence, and control, advocating instead for more accurate, respectful and empathetic communication. Check out this abstract published in 1999: “In diabetes care, moving from compliance to adherence is not enough. Something entirely different is needed.”
What’s changed?
Over the past 14 years, the #LanguageMatters movement has gained international momentum. Various groups and organisations have championed language that promotes respect, accuracy, and inclusion. There are 20+ diabetes language position statements around the world.
As a result, we’ve seen some changes in healthcare communications, media reporting, and journal papers. Harmful terms like “compliance” and “control” have been rightly challenged and replaced with more appropriate terms and thinking. We’ve seen increased used of person-first and strengths-based language in media and research articles.
Importantly, growing research shows how language influences how people with diabetes feel about themselves, their health, and their interactions with care systems. In parallel, awareness of diabetes stigma has increased, and with it, an understanding that language can either reinforce or reduce that stigma. More than 3,500 individuals and organisations in 115 countries have taken the Pledge to End Diabetes Stigma. Key components of this Pledge are commitments to:
“Using accurate, respectful, inclusive, non-judgmental, and strengths-based language, messaging, and imagery”, and
“Avoiding and challenging fear-based messaging and imagery”.
What still needs to change?
Many diabetes language position statements include suggestions of terms to avoid and alternatives, plus reasons why the alternatives would be better choices. These are underpinned by evidence but, also, reflect a moment in time, as language is always evolving. Our language must keep pace with emerging evidence and insights. This includes recognising when outdated terms or narratives no longer serve our goals of accuracy, equity, and respect.
Take the term “lifestyle”, a fashionable catch-all in public health and media discourse. It’s not uncommon to hear some types of diabetes described as “lifestyle conditions”, caused by “lifestyle factors” or “lifestyle choices”, and sustained by low uptake of “lifestyle behaviours”. And that people just need to make some “lifestyle changes” or choose a “healthy / healthier lifestyle”. There is now a whole professional field of “lifestyle medicine”*.
There are growing concerns about the “lazy language of lifestyle”. At best, it’s vague. Lifestyle can mean anything: activity, nutrition, sleep, social connections, screen time, alcohol use. What exactly are we referring to? This lack of clarity makes messaging ineffective. The lazy language of “lifestyle” frames health purely as individual choice, ignoring structural barriers (e.g. food insecurity, unsafe neighbourhoods), economic constraints (e.g. affordability of fresh food) and time poverty (e.g. working multiple jobs being a barrier to cooking, exercising, sufficient sleep). Importantly, it is also highly misleading. Let’s be clear: no type of diabetes is caused solely by an “unhealthy lifestyle”. Any given individual’s risk is shaped by their genetics, ethnic background, environment, social determinants, behaviour, and potentially unknown risk factors. Finally, it is also harmful. Moralising health behaviours facilitates the shaming of people for not having made “healthier choices”. So, at worst, the term “lifestyle” reinforces harmful social narratives, contributes to stigma and self-stigma, and obscures the structural and systemic drivers of various types of diabetes and its complications. It undermines the call for policy and systems changes, and investment in care and research.
Our research supports this critique. It shows that people with type 1, type 2, and gestational diabetes often experience blame and shame. (NB. No-one has yet researched stigma surrounding rare types of diabetes). Further, studies have found that framing type 2 diabetes as a personal failure or a simple matter of “lifestyle” can worsen public attitudes and reduce support for systemic, population-level, or government-funded interventions.
Relatedly, we must be cautious with the terms, “prevention” and “preventable.” It is often reported that “diabetes is preventable” or more specifically that “type 2 diabetes can be delayed or prevented in up to 58% of people”. This is based on strong evidence from several well-funded randomised controlled trials, in which participants were well-supported, with intensive coaching and/or medications, to achieve and sustain weight loss. However, in the real-world, weight loss is much harder to achieve and sustain and type 2 diabetes prevention has been modest.
Health-promoting behaviours, such as balanced eating, regular physical activity, quality sleep, and stress management, can reduce (but may not eliminate) the risk of developing type 2 and gestational diabetes. Along with effective metabolic management, they may also reduce (but may not eliminate) the risk of diabetes-related complications among people with any type of diabetes. But it is important to acknowledge that even with excellent self-care and management, complications may still occur. In contrast, the term “prevention” may create false reassurance for those at-risk, or contribute to feelings of failure, self-blame, and isolation among people who experience complications.
“Risk reduction” has been recognised as preferable to “prevention” in some other areas of health because it more accurately reflects the nature of the evidence. Risk reduction acknowledges the complexity of modifiable and non-modifiable risk factors; the reality of health inequities, and; that some risks cannot be fully prevented but may be reduced. This term may also promote agency, supporting individuals to do what they can.
Let’s be clear: raising awareness of risk and risk-reduction strategies is important. What we must avoid is overstating the role of individual behaviour. Diabetes and its complications are never simply the result of personal choice. Messaging that suggests otherwise is misleading and harmful. It is reasonable to suggest that (almost) everyone can reduce (some of) their risk(s) but it is not accurate to suggest that everyone can prevent diabetes or its complications.
Finally, let’s also rethink how we talk about prevalence and the economic health costs associated with diabetes. Research and media alike regularly note the increasing number of “diabetes cases” and “economic burden of diabetes”. In the context of entrenched self-blame, this language is deeply problematic. Both terms dehumanise diabetes. People are not a burden. The true burden lies in systems that do not meet people’s needs, in messaging that blames and judges, and in the perpetuation of diabetes stigma, leaving people isolated and without the social connections and supports they need to live well with diabetes.
A call for ongoing reflection
To everyone already embracing more respectful, person-centred language, thank you. Your efforts are shifting conversations, challenging outdated norms, and helping to reduce stigma. But a word swap alone doesn’t solve the problem. At the heart of the international #LanguageMatters and #EndDiabetesStigma movements is a deeper, ongoing commitment to listen, learn, and continually improve how we understand and talk about diabetes.
Evidence is continually evolving. Terms once widely accepted may no longer serve us. New terms may unintentionally reinforce old harms. That’s why we keep listening to people with diabetes, because their insights must guide how we communicate, connect with, and care about all people living with, or affected by, diabetes.
*At the ACBRD, our research includes a focus on how best to support individuals in the adoption and maintenance of health promoting behaviours. e.g., healthy eating, physical activity, medication taking, diagnostic screening. We recognise the importance of behavioural science in supporting diabetes management and risk-reduction. While our work overlaps with areas labelled “lifestyle medicine,” we reject the term and its assumptions, which can oversimplify health and reinforce stigma.
Want to learn more? Check out our blogs on #LanguageMatters and #EndDiabetesStigma.
