New treatments and new technologies are currently at the forefront of diabetes care. But sometimes it is the simple things, such as language, that can have a profound effect on the people with diabetes whom we support.
The language used in diabetes healthcare is key to building a relationship between people with diabetes and healthcare professionals which promotes trust and encourages self-management and shared decision making.1 It is notable that many words in diabetes healthcare are likely to be negative and judgmental and, when used indiscriminately, are likely to stigmatise people with diabetes and contribute to shame and diabetes distress.1
Following position statements in both Australia and the USA, a collaboration between people with type 1 and type 2 diabetes, diabetes healthcare professionals and NHS England has resulted in guidelines which have helped to highlight this important issue.2
The guidelines have picked out several areas where the language chosen can have negative connotations. Some of these are summarised here, alongside possible alternatives that you could consider using instead.
AREA 1: DISCUSSING DIABETES CONTROL
‘What’s your control like?’ might seem like a good way to start the discussion in a diabetes consultation, and I am sure many of us have used this approach. However, for many people with diabetes, it may feel quite challenging and suggest that that the focus is just on their control and not on their whole life and how their diabetes may fit into it.
The word ‘control’ seems quite innocuous, but may imply that diabetes can be controlled. The reality is somewhat different, and we know that there are many variables, such as insulin absorption, that can influence the outcome and result in unpredictability.
What can you say instead? Consider talking more about blood glucose levels rather than control, and try to discuss how diabetes is affecting the individual’s life.
‘Where possible, try to avoid “should”, “can’t”, “must”. Using words such as “could” or “consider” or “you could choose” can help.’
AREA 2: COMPLIANCE
‘Non-compliant’ is commonly used to describe people with diabetes who are perceived not to be following advice given by healthcare professionals. Again, the implication is that if you are ‘compliant’, glycaemic targets will be achieved.
Yet we know that there is no linear relationship between good health and ‘compliance’, and the tools we have to manage diabetes are imperfect. It is also easy to assume that if you have diabetes you will be more ‘compliant’ than a person without diabetes, which is not the case.
Where possible try to be aware of talking about someone with diabetes in negative or judgmental terminology, even if it is well-intentioned.
AREA 3: FEELINGS OF SHAME
‘I have been a bad diabetic – I know you’re going to tell me off.’ I am sure that many of you will have heard this in a diabetes clinic consultation.
Unfortunately, such comments probably stem from the individual’s previous consultations during which they may have been told what to do and made to feel ashamed of not achieving ‘good control’.
We advise people with diabetes to follow ‘rules of self-management’, but people can feel helpless and inadequate when it is unachievable. It can be good to explore what a person means when they say ‘bad diabetic’ rather than dismiss, or agree or reprimand. It might give you more insight into the difficulties the individual is facing.
Always try to respond to anything that can imply ‘shame’ with a comment such as ‘there is no such thing as good or bad diabetes’. If you can, avoid ‘diabetic’ as it may imply that a person is only defined by their diabetes. Using ‘suffering with’ also has negative implications and it can be better just to say ‘living with diabetes’.
Where possible try to avoid ‘should’, ‘can’t’, ‘must’. These words suggest we are giving instructions, when ideally we should aim to have a collaborative relationship. Using words such as ‘could’ or ‘consider’ or ‘you could choose’ can help with this.
‘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.’
PERSON-CENTRED LANGUAGE
To some people, this type of guidance may be considered to be about political correctness. However, we are supporting people with diabetes to achieve good clinical outcomes, and using more empathic, encouraging and person-centred language is important in that regard.
I would strongly encourage you to read the full guidelines, so that we can all aspire to use the most appropriate language possible. I’ll leave you with a quote from an individual with type 1 diabetes, which will hopefully underline the importance of language and the impact it can have.
‘Being described as “non-compliant” is awful, and does not 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. Life is way more than type 1 diabetes, and it isn’t always given top priority. Life gets in the way.’
Sarita Naik, Consultant Diabetologist, University College London Hospitals NHS Foundation Trust
REFERENCES
- Dunning T et al. 2017 Diabetes Education 43 18–26.
- Cooper A et al. 2018 Diabetic Medicine doi:10.1111/dme.13705.
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