In the run up to the Diabetes Professional Care Conference (Nov 14-15), I had the privilege of gaining insight from one of their esteemed speakers, Anne Cooper, on the importance of Language in diabetes. I hope you enjoy the piece.
“My son hates being called a diabetic. He’s a person, not a condition. He doesn’t like being asked if he is ‘well controlled’ either – I told him to reply with ‘no – I scream & shout and pee on the floor’”- Caryn, mother of a child with Type 1 diabetes
When we talk to people with diabetes, language matters. It really matters.
When we talk to people with diabetes, language matters. It really matters. “We” is anybody around those who live with the condition: GPs, nurses, dieticians, employers, family, friends. Language can make us feel great or make us feel worthless; our choice of words might heal old wounds or open fresh ones. Caryn’s son knows that from experience, and so too do millions of other people with diabetes around the globe.
“Language creates an environment where people can be more or less resilient,” says Anne Cooper, a founding member of the NHS-backed Language Matters working group, who has Type 1 diabetes and helped to develop a new set of recommendations on how to talk to people with the condition. “Labelling influences how you behave – if you’re cared for with positive use of language, you can better self manage.
“I remember, as a nurse, walking down the corridor and hearing a doctor talking to staff about his next clinic. He said ‘I’m off the see the diabetics’. They’re people who happen to have diabetes, and although caring for people is hard and we’re all under a lot of pressure, we’ve got be careful not to move away from a person-centred approach.”
“Would you introduce a child as myopic?” asks another parent whose son lives with diabetes. “I doubt it very much. So why say ‘diabetic’? The phrase ‘non compliant’ is awful too, and it doesn’t reflect the fact that everyone is doing their best. Maybe not the same ‘best’ as someone else, or even their best ‘best’ but just the best they can at that moment.”
The stigma of being called, for example, “a diabetic” or “non-compliant” can make a lasting impact; one recent literature review showed the use of such terms can be stressful for the individual and reduce the likelihood of their attending healthcare appointments and self-managing their condition effectively. Feedback from a focus group of people with diabetes (n=68) in a 2018 qualitative study showed that many commonly used words and phrases can be damaging to their self-esteem:
- Judgment: “compliance/adherence,” “control,” “controlled/poorly controlled,” “lazy,” and “good/bad”
- Directives: “should/shouldn’t,” “have to,” “need to,” and “can/can’t”
- Labels: “diabetic” and “brittle”
- Misinformation or disconnection: “you’re fine,” “normal,” and “cure”
Yet for people with Type 2 diabetes, who make up around 90% of all people with diabetes in the UK and 40% of whom have at least three comorbid chronic diseases, framing the conversation correctly can be a serious force for good in empowering people to make healthy lifestyle changes.
“The general idea behind increasing people’s motivation is to focus on the good things to accumulate the energy and enthusiasm to carry on and to build confidence in being able to deal with problems,” says Dr Lucy Rechakova, KTP Associate (Health Psychology) at Changing Health. “For example, you could use positive framing, like ‘we could improve…’ instead of ‘this isn’t very good’.”
“Another thing is to focus on what the person’s done well in the past – and there is always something people have done well, that worked, that they can repeat to start with and make the lifestyle change feel less like a major change. Celebrating success, however small, is important to keep up the momentum.”
Indeed, as a survey study asking patients about their experience with health care providers at the time of diabetes diagnosis n = 172) showed, reassuring messages from healthcare providers are associated with less diabetes distress and better self-management at 1 to 5 years after diagnosis.
Small changes in the way we talk to or about people with diabetes can have big implications for their health.
Clearly, making small changes in the way we talk to or about people with diabetes can have big implications for their physical and mental health. More positive, collaborative and jargon-free language is vital. As Diabetes Australia points out in their ground breaking position statement on this issue, and to quote Rudyard Kipling: “words are, of course, the most powerful drug used by mankind.”