Why Language Matters in diabetes care

Have you ever had the experience of hearing a person with diabetes say, “I’m a bad diabetic; I know you’re going to tell me off”, “I just can’t lose weight, no matter what diet I try” or “I hate diabetes”, and not quite known what to say next, especially in that moment? If so, you’re not alone. One clinician I know tells me that at least one person in every single clinic says the first comment, even though she and her colleagues (as far as she knows) never go into work intending to tell anyone off. Such an expression catches her off guard and makes her wonder what the best response might be. It’s a similar story with the other frequently heard comments above.

Experiences like this have led to a range of recent publications discussing language and diabetes, and how we healthcare professionals might reply with insight and in a helpful manner during our interactions with and about people with diabetes, including both verbal and non-verbal language. One of these is a literature review showing clearly how disapproving, judgemental, stigmatising or critical language can negatively impact peoples’ self-esteem, self-efficacy and diabetes distress (Lloyd et al, 2018). It particularly highlights stigma, which can lead to feelings of shame and judgement, and to disengagement with health services. In contrast, the review shows that “the adoption of a warm, friendly and reassuring manner is more effective than consultations that were more formal and did not offer this”.

Another recent publication is a powerful editorial calling for more inclusive and collaborative, person-first language (Holt and Speight, 2017). The editorial is based on a familiar acute-setting scenario and shows how the words can be changed to remove the judgement, paternalism and stereotyping that are so detrimental. The authors also draw parallels with other conditions: we don’t call someone a “haemorrhoidic” or a “cancic”, so why are we so quick to use the impersonal term “diabetic”? The authors point out that a person is not their condition, nor are they necessarily “in control” of it, due to diabetes’ habit of being “disobedient, caring little for the textbook answers we might know”, to quote one of my own opinion pieces (Walker, 2018).

There is an international context to this “Language Matters” movement. A position statement has long been in place in Australia (Diabetes Australia, 2011), which offers a guide to commonly used expressions and some recommended alternatives. The American Diabetes Association and American Association of Diabetes Educators have recently followed suit, in a joint publication explaining how words and actions can severely hamper not just interactions between people with diabetes and healthcare professionals but also attendance itself, as people seek to protect themselves from further criticism or admonishment by avoiding clinics altogether (Dickinson et al, 2017).

Language Matters in the UK
Bringing together all this work, and more, has resulted in the UK’s own position statement, Language Matters: Language and diabetes (NHS England, 2018), published as NHS England’s contribution to #TalkAboutDiabetes, the theme for Diabetes UK’s 2018 Diabetes Week. The position statement is supported by all the major UK organisations in diabetes care, and was written by a multidisciplinary group guided, importantly, by two people with diabetes, who also wrote the foreword.

Language Matters uses examples of situations often cited by people with diabetes, who were widely invited to contribute, not only online but also in person and by personal contact. The statement then explores what might lie behind comments such as the previously mentioned “I’m a bad diabetic, you’re going to tell me off”, and offers some potential alternatives. These examples are bookended by a series of principles and tips, derived from the literature and from themes identified by Lloyd et al (2018).

The UK publication is intentionally an “easy read” and highly practical, recognising the time pressures placed on healthcare professionals everywhere. For example, it uses quotes from people with diabetes to express how ill-chosen words and actions can make them feel, and how some of our shorthand medical terms can have a vastly different meaning when you are on the receiving end – for example, “diabetes control” may feel entirely inappropriate when everything from the weather to your Sunday dinner seems intent on having its effect on your blood glucose numbers!

One thing is common to all the publications regarding language and diabetes: they acknowledge that much of the negative things that are said and done in consultations can be unconscious or even well-meaning. The drive among clinicians to “fix and heal” is huge, even though diabetes is not a condition that can be fixed or healed. So responses such as “Oh no, it’s not that bad” or “If you were able to lose a bit of weight, your HbA_1c might improve” or “Just try yogurt instead of ice cream”, no matter how nicely said, can be falsely reassuring or even dismiss the emotional point. This is inadvertent, for sure. However, as these various papers show, words belie attitudes. As healthcare professionals who see many, many people a day, we are in danger of creating stereotypes as we strive to cope. This can quickly lead to lack of insight into an individual’s personal struggles and needs. Not always and not everyone, of course, but enough for negative language to perpetuate. So we are encouraged to reflect and consider ever more carefully how we respond both to and about the people we are seeing. All the publications also encourage alertness to others’ language and the possibility of challenge where this is found to be inappropriate.

In conclusion, a great deal has happened regarding language and diabetes quite quickly. Perhaps this is an “idea whose time has come”, as the expression goes. There is more evidence than ever about the deleterious effect of others’ negative language and actions relating to people with diabetes, yet happily there is an equal number of practical ways this can be addressed, and so these effects can be reduced or avoided. #LanguageMatters

Language Matters: Language and diabetes is available to download from:
https://bit.ly/2l3OZPi