diabetes research and clinical practice 173 (2021) 108655

Contents available at ScienceDirect

Diabetes Research
and Clinical Practice
journal homepage: www.elsevier.com/locat e/dia bre s

Invited review

Our language matters: Improving communication

with and about people with diabetes. A position
statement by Diabetes Australia

J. Speight a,b,*, T.C. Skinner b,c,d, T. Dunning e, T. Black f, G. Kilov g,h, C. Lee f, R. Scibilia f,
G. Johnson f
a
Deakin University, School of Psychology, Geelong, Victoria, Australia
b
The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, Melbourne, Victoria, Australia
c
La Trobe Rural Health School, La Trobe University, Bendigo, Victoria, Australia
d
University of Copenhagen, Psychology, Copenhagen, Denmark
e
Deakin University, School of Nursing, Geelong, Victoria, Australia
f
Diabetes Australia, Canberra, ACT, Australia
g
University of Melbourne, Parkville, Victoria, Australia
h
Launceston Diabetes Clinic, Launceston, Tasmania, Australia

A R T I C L E I N F O A B S T R A C T

Article history: The words used about diabetes affect the physical and emotional health of people living
Received 17 December 2020 with diabetes. They also affect how individuals and society view people living with, or at
Accepted 4 January 2021 risk of, diabetes. People with diabetes, their families, and people at risk of diabetes, need
Available online 7 January 2021 and deserve communications that are clear and accurate, respectful and inclusive, and free
from judgement and bias. The aim of this position statement is to help bring about positive
change in the language used about diabetes. It is based on 30+ years of research into the
Keywords:
experiences of people with diabetes.
Diabetes
Changing the language of diabetes can make a powerful and positive difference to the
Language
emotional well-being, self-care and health outcomes of people affected by diabetes. It also
Communication
affects community and government support for funding diabetes care, prevention and
Stigma
research.
Emotional well-being
Diabetes Australia encourages everyone communicating about diabetes, or about people
Self-care
affected by diabetes, to choose and use their words carefully to support all people affected
by diabetes. This position statement is intended as a guide for people working in health-
care, the media, government and policy, academia, industry, as well as employers and
the community. It may also be helpful for the family and friends of people with diabetes.
Ó 2021 Elsevier B.V. All rights reserved.

* Corresponding author at: The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria and Deakin University,
Melbourne, VIC, Australia.
E-mail address: [email protected] (S. J.).
https://doi.org/10.1016/j.diabres.2021.108655
0168-8227/Ó 2021 Elsevier B.V. All rights reserved.
2 diabetes research and clinical practice 173 (2021) 108655

Contents

1. Introduction: Why our language matters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

2. Why be offensive when you could be inclusive? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
3. Dispelling the myths . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
3.1. Myth 1: ‘‘That’s just political correctness, it’s so PC!”. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
3.2. Myth 2: ‘‘People are too sensitive” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
3.3. Myth 3: ‘‘There are more important issues” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
4. Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
4.1. Guiding principles: More than words . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
4.2. Choosing our words . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
4.3. Small change, big difference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
4.4. Let’s change the conversation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Contributors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Declaration of Competing Interest. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Acknowledgements. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Further reading . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

1. Introduction: Why our language matters

‘‘Words are, of course, the most powerful drug used by man- clinician leads to greater information sharing, better tai-
kind” Rudyard Kipling loring of care to the person’s needs, and more consistent
medication taking.
Our language matters. The words we choose, and the way

diabetes language affects the emotional well-being of
we use them, influence, persuade and affect how people view
people affected by diabetes [18]. In particular, adults
the world. Words do more than reflect reality: they create
and adolescents with diabetes feel guilty or anxious
reality. They can create a culture in which people feel valued,
when their diabetes management gets off track
understood and supported – or one in which people feel
[19,20]. Adults and adolescents with diabetes (as well
misunderstood, undermined, stigmatised and excluded.
as their parents) feel upset, guilty, frustrated and judged
Words can express conscious or unconscious bias. It is impor-
for ‘uncontrolled diabetes’ [21,22] and/or for their food
tant to communicate with language that is culturally sensi-
choices [1,2,23].
tive and appropriate.

diabetes language contributes to social stigma and dis-
Whether we like it or not, the way we communicate has con-
crimination of people affected by diabetes [1–3]. Most
sequences. There is ample evidence to show that the current
people with diabetes have experienced social stigma
language used for and about diabetes has serious problems:
[1,2,24]. This includes unhelpful comments and judg-
ment from other people [21]. Diabetes stigma is associ-

diabetes language in the media is stigmatising [1–3].
ated with diabetes distress, depressive and anxiety

diabetes language at diagnosis has a lasting impact on
symptoms, lower social support and lower self-esteem
the person with diabetes [4,5].
[25–28]. It affects self-care and willingness to seek

diabetes language is confusing, unrealistic, inaccurate,
healthcare support [29]. It affects community support
frustrating, intimidating, and harmful [6–9].
for funding diabetes care and research [30]. Adolescents

diabetes language affects continuity of care. This
with diabetes feel ‘dehumanised’ [22].
includes attendance and experiences at diabetes clinics

diabetes language affects the motivation of people
and services, including feeling criticised, judged, belit-
affected by diabetes [21,22].
tled and patronised, or feeling understood, supported

diabetes language affects willingness to take insulin,
and confident [10–12]. This affects trust in health profes-
particularly among adolescents with type 1 diabetes
sionals and willingness to confide in them [13–15]. It also
[22] and adults with type 2 diabetes [31–33].
affects attendance at diabetes clinics and uptake of

diabetes language affects clinicians’ attitudes and treat-
structured diabetes education programs [10,16]. A sys-
ment recommendations [34–36].
tematic review has identified that continuity of care is a

diabetes language affects the glucose levels of people
matter of life and death [17]. The authors of that review
with diabetes [37–39].
propose that the reasons for this are that trusting the
 diabetes research and clinical practice 173 (2021) 108655 3

diabetes language alienates or isolates people affected It is important to note that better communication does not
by diabetes [7,11,21,22,40]; and loneliness is known to take more time; it can save time [43].
be more damaging to health than smoking [41]. In addition, a 2019 survey identified words that are unac-

diabetes language contributes to diabetes distress and ceptable, and those that are acceptable, to people with dia-
‘burnout’ among health professionals [42], and affects betes (see Fig. 1).
trainees’ interest in specialising in diabetes [34].

a) Words about people

Unacceptable Acceptable

victim
sufferer
consumer
patient
normal
client
diabetic
patient*
person with diabetes
*only in context of healthcare setting

carers
family / friends

clinicians
healthcare providers
diabetes care team
healthcare professionals
100% 80% 60% 40% 20% 0% 0% 20% 40% 60% 80% 100%

b) Words about diabetes and its complications

Unacceptable Acceptable

disease
condition

non-severe hypoglycaemia
mild hypoglycaemia
self-treated hypoglycaemia

diabetic complications
diabetes-related complications
100% 80% 60% 40% 20% 0% 0% 20% 40% 60% 80% 100%

c) Words about managing diabetes

Unacceptable Acceptable

cheating
adherent / non-adherent
compliant / non-compliant
doing [the activity] as recommended
taking medications
engaged

testing glucose
checking glucose
monitoring glucose

good / bad
(un)controlled diabetes
treating diabetes
optimal / not optimal glucose
(un)stable
normal glucose / in 'normal range'
high / low glucose
within / outside target range
managing diabetes / glucose
100% 80% 60% 40% 20% 0% 0% 20% 40% 60% 80% 100%

Fig. 1 – Words that are acceptable and unacceptable to adults with diabetes*: a) Words about people. b) Words about diabetes
and its complications. c) Words about managing diabetes.
*In 2019, Diabetes Australia conducted an international survey ‘Do our words matter in diabetes?’ online (14 Sept to 31 Oct
2019). Of the 751 participants, 70% had type 1 diabetes and 24% had type 2 diabetes; 41% were women, 19% were men, and
40% preferred not to say; 81% were living in Australia; 98% spoke English at home.
4 diabetes research and clinical practice 173 (2021) 108655

2. Why be offensive when you could be technologies, well-funded and accessible diabetes services,
inclusive? prevention and research. Language is important too. When
people feel blamed, judged or stigmatised for having diabetes,
Some people say ‘‘People with diabetes call themselves ‘diabetic’, so they stop talking about it, and they may start hiding it. This
why shouldn’t I?”. While many people feel comfortable referring has consequences. It may mean they do not check their glu-
to themselves as a ‘diabetic’, our survey shows that 1 in 2 peo- cose levels or inject insulin in public; they do not attend clinic
ple find the label ‘unacceptable’ and 1 in 4 find it ‘harmful’. appointments; they do not confide in their health profession-
Of course, we should not tell people with diabetes what als or seek support from family/friends; they do not want to
they can or cannonot call themselves. They are free to use know their glucose levels; they do not attend screening for
whatever words they wish. Some people with diabetes think complications. Or, it may mean that they do all of this as rec-
that avoiding the word ‘diabetic’ causes more stigma than ommended, but feel anxious, distressed, alone/isolated etc.
using it. Others may have been socialised into using that lan- These are all important issues. Nothing is more important
guage, mirroring the words used around them ever since their than ensuring that the person with diabetes can manage their
diagnosis. condition to the best of their ability and prevent its serious
Other people – whether they are working in healthcare, complications.
media, policy, academia, industry or elsewhere – have a
responsibility to engage all people affected by diabetes in pos-
4. Recommendations
itive, constructive ways. Labelling a person as a ‘diabetic’ runs
4.1. Guiding principles: More than words
the risk of causing offense or alienating that person. People
are rarely offended by being referred to as a ‘person’.
Our language is more than just the words we use. Body lan-
This is just one small part of why our language matters. It
guage, tone and attitude are also important. Language
is so much more than whether we use the words ‘diabetic’ or
evolves. If attitudes do not evolve with it, then new words
‘person with diabetes’. This position statement is about help-
take on old meanings. In diabetes, this has happened with
ing everyone to respect and understand the person who is liv-
the word ‘adherent’, which some people use instead of ‘com-
ing with diabetes.
pliant’. Both words convey an attitude that the person with
diabetes would be doing better if only they had followed
3. Dispelling the myths someone else’s advice, as shown in these responses to our
2019 survey:
3.1. Myth 1: ‘‘That’s just political correctness, it’s so PC!”
‘‘When I was a teenager, my doctor compared my HbA1c to a
This is not about being politically correct. It is about understand-
grade at school saying it was like getting a B or C grade. But
ing and recognising that our words have meaning and influence.
didn’t advise me how to get an A grade! I was very studious
They can reflect and preserve unconscious bias or they can show
and wanted to get all As at school, so my diabetes felt like some-
respect and empathy. It is all about respect and accountability.
thing else that I wasn’t good enough at”
Our language affects the way people with diabetes think and feel,
‘‘[I] go to the doctor because I am experiencing severe hypos. He
as well as what they do (or do not do) to manage their diabetes.
says, ‘hypos are caused by eating too little food and that obvi-
Importantly, our language also affects the way individuals and
ously doesn’t apply to you’”
society view people with diabetes.

In addition to words, Our Language Matters draws attention

3.2. Myth 2: ‘‘People are too sensitive”
to the need for positive attitudes to diabetes and to people with
diabetes, as shown in these responses to our 2019 survey:
People with diabetes are not ‘too sensitive’, they do not need
to ‘get over it’. It is easy to suggest that they just need to
‘‘I always hate jokes about diabetes. I find it aggravating when
‘toughen up’, particularly if we have never experienced adver-
people at work or on TV joke about getting diabetes from a
sity, blame, shame, stigma or discrimination. We all have a
doughnut or piece of cake”
part to play in ensuring that the seriousness, complexity
‘‘Sometimes people [make] a joke but it’s offensive and it means
and challenges of living with diabetes are understood and
they don’t take the condition seriously and I know they aren’t
not trivialised. We all have a responsibility not to add to the
going to be willing to support and accept me”
burden of living with diabetes, by causing distress or harm,
or undermining the person’s capabilities.
So, our words need to show we CARE and they need to
remove BIAS (see Box 1).
3.3. Myth 3: ‘‘There are more important issues”
4.2. Choosing our words
Putting a focus on language is not trivial. There are many
important issues in diabetes, e.g. access to healthy foods ‘‘Words can inspire. And words can destroy. Choose yours
and physical activity, affordable access to medicines and well” Robin Sharma
 diabetes research and clinical practice 173 (2021) 108655 5

Box 1 – Our language matters because it can show we CARE and it can remove BIAS.

Our language needs to show we CARE:

Curious - Labels (e.g. as ‘diabetic’, ‘non-adherent’, ‘poorly controlled’) lead to biases, which can affect the way we interact with
that person. They can stop us asking useful questions and identifying solutions. Instead, be curious. Try asking the person how
they are feeling, how things are going in their life, and how that might be affecting their diabetes.
Accurate - Be clear and concise. Use plain language that describes the behaviour without judging the person. Negative judgment
can alienate and stigmatise people.
Respectful - Respect is a way of treating or thinking about someone. If you respect someone, you are more likely to: represent
their needs positively; offer them information in a way they can understand; acknowledge their preferences and decisions;
recognise their cultural practices and values; recognise they are doing the best they can right now with the resources available
to them.
Empathic - Empathy shows that you understand the person, their diabetes and their personal circumstances – that you
appreciate their journey and challenges. People with diabetes don’t want a judge, they want help and support, someone ‘on
their side’.

Our language needs to remove BIAS:

Blame - Feeling blamed or shamed can prevent a person from managing their diabetes to the best of their ability, or accessing
the care they need, for fear of judgement or a negative response.
Irreverence - Showing a lack of respect to people with diabetes diminishes their position in our community and is offensive.
Using diabetes as a punchline in jokes is not clever or funny; it is insensitive and harmful.
Authority - It is futile to try to ‘make’ people change. Managing diabetes well over a lifetime needs collaboration and support,
not threats of long-term consequences. Using words like ‘should’, ‘must’, ‘allowed’, ‘cheat’ leave people with diabetes feeling like
naughty children being scolded by a parent/teacher. They can make the person feel like a failure.
Stigma - People with diabetes often feel criticised, judged and/or misunderstood. This can lead them to feeling unable to share
their thoughts or to be open about how they manage their diabetes. Hiding their diabetes and how they manage it can affect
their emotional and physical health.

Box 2 – Examples of the difference words can make in written documents.

a) Journalists can change their news articles.
Instead of. . . Try this. . .
Good news for Australia’s 1.3 million diabetic Good news for the 1.3 million Australians with diabetes.
sufferers.
A new device means no need to test blood sugar A new device makes it easier for people with diabetes to check their
levels frequently during the day to keep the glucose levels regularly, day and night, to help manage
disease under control. their diabetes.
Demand for this new technology is expected to Demand for this new technology is strong from the 121,000
put a strain on the health system, as Australia’s Australians with type 1 diabetes who need to check their
diabetic population booms, fuelled by the glucose levels at least 4 – 6
ongoing obesity epidemic. [55 words] times daily. [60 words]
i) Health professionals can change their referral letters.
Instead of. . . Try this. . .
Jack has been a type 2 diabetic for 10 years. He is non-adherent. Jack has had type 2 diabetes for 10 years. Sometimes,
He is failing on oral anti-diabetic he doesn’t take his tablets
agents and with lifestyle modifications. His diabetes is because of their side effects. He finds it hard to maintain
uncontrolled. healthy habits at work.
Its been getting worse over the His HbA1c has increased over the past 12 months, now 9.4%.
past 12 months. His HbA1c is 9.4% [41 words]
[41 words]
j) Researchers can change their journal articles.
Instead of. . . Try this. . .
Efficacy of XXX in patients with poorly controlled Efficacy of XXX in adults with type 2 diabetes.
type 2 diabetes.
At least 45% of patients with type 2 diabetes At least 45% of adults with type 2 diabetes have an
fail to achieve adequate glycaemic control (HbA1c). One of HbA1c above the range
the major contributing factors is poor medication adherence. known to prevent/delay complications. One of the
major contributing factors is
not taking medications as recommended.
In this RCT, subjects with inadequately controlled In this RCT, participants with HbA1c >7.0% were
type 2 diabetes were randomised to . . . [51 words] randomised to. . . [50 words]
 6
Table 1 – We can change the way we communicate about people.
Instead of. . . Try. . . Why it matters

Diabetic (noun) Person There is so much more to a person than their diabetes. The label ‘diabetic’ defines a person by their
Person with diabetes diabetes. It makes it easy to overlook the person’s
Person living with diabetes other priorities, e.g. family, work, hobbies. No-one calls a person with cancer a ‘cancic’, so why do it
with diabetes?
People with diabetes are free to refer to themselves in whatever way they wish – but others have a
responsibility to use inclusive language.
Sufferer (noun) While some people with diabetes (and its complications) find it challenging and distressing, very few
‘suffer’. Labelling people with diabetes
as ‘sufferers’ positions them as helpless victims, rather than empowering them to live well with
diabetes.

diabetes research and clinical practice

Normal, Non-diabetic, Healthy (person) Referring to people who do not have diabetes as ‘normal’ implies that people with diabetes are
‘abnormal’. This is stigmatising.
Patient (noun) ‘Patient’ comes from the Latin ‘patiens’, meaning ‘to suffer’ or ‘to bear’. This label places the person
in a passive role, tolerating their situation,
awaiting an ‘expert’ or ‘health provider’ to intervene. It does not reflect the realities of living with
and managing diabetes every day.
Patients are people. People are individuals, with their own preferences, priorities and lives beyond
diabetes.
Consumer (noun) Referring to a person with diabetes as a ‘consumer’ can be positive, e.g. consumers tend to get
involved and make choices. Yet, people with
diabetes don’t always experience real choice (due to limitations in access to healthcare etc), so this
term can be unhelpful.
Difficult/challenging patient Finding it difficult The person with diabetes is not ‘difficult’ nor ‘challenging’. The diabetes is. When a healthcare
Has concerns about. . . professional describes the person
Has other priorities right now (rather than their situation) as ‘difficult’, it typically communicates that the health professional is
frustrated.
In denial Most people with diabetes described as ‘in denial’ do not actually deny that they have diabetes.
Often, they are struggling to
come to terms with their reality. Not everyone will feel ready to deal with it immediately. Labelling is

173 (2021) 108655

judgmental. Use words that empower.
Unmotivated Most people are motivated to live a long and healthy life. Diabetes can be difficult to manage and
Unwilling sometimes there are obstacles to
optimal self-management that may outweigh the benefits for the person at that time. Some people
with diabetes come to the conclusion that the
changes are not worth the effort or that they are too difficult/unachievable. This is reasonable for
that person. They need respect and support.
Subject(s), patients (noun; in research setting) People with diabetes Researchers have traditionally labelled those who take part in studies as ‘subjects’. However, we
Participant(s) need to remember that people who
Respondent(s) take part in research volunteer and consent to do so. They rarely sit passively and have things done
to them. They are often very active, undertaking
a number of tasks and activities. People who take part in research deserve to be treated with respect.
In addition, research participants
are not always ‘patients’ and should not be referred to as such.
Carers Family/friends In most cases, the family/friends of people with diabetes are not their ‘carers’. The label ‘carer’
positions the person with diabetes
as a passive recipient of care.
This can be disempowering and stigmatising.
Health provider(s) Health professional(s) Referring to a health professional as a ‘provider’ suggests that they provide health to the person with
Clinicians Diabetes care team diabetes, and this positions
the person as a passive recipient of their care. Diabetes is a condition that requires active, ‘24/70 self-
management. So, ‘provider’ is unhelpful
and perpetuates a power imbalance. Health professional is more accurate and neutral.
Table 2 – We can change the way we communicate about diabetes and complications.

diabetes research and clinical practice

Instead of. . . Try. . . Why it matters

Disease Condition Disease has negative connotations of something that may be contagious and nasty. People with diseases are
often avoided or feared. Diabetes is a chronic condition that the person will live with for the rest of their
life. It is a condition to be managed, not a disease to be treated.
Mild diabetes Diabetes There is no such thing as ‘mild’ diabetes. All diabetes is serious. Use of this term does a great disservice
to people with diabetes.
Mild hypoglycaemia Self-treated hypoglycaemia Some low glucose levels can be managed by the person with diabetes. This does not mean they experience
them as ‘mild’. Labelling as ‘mild’ can dismiss the effort the person puts in to avoid severe
hypoglycaemia, and the impact it has on their daily activities, sleep or emotional well-being.
Obese person or weight Healthy/unhealthy weight The term ‘obese’ is frequently used to label a person, e.g. ‘he or she is obese’, in a way that suggests excess
Normal weight weight is a trait or identity, rather than a state or a medical condition. Obesity stigma/discrimination
is common in schools, workplaces, healthcare and society – it is damaging and needs to be challenged.
Furthermore, excess weight is fast becoming ‘the norm’ in society. So, the term ‘normal weight’
is not an appropriate term to describe healthy weight.
Diabetic complications Diabetes complications Using ‘diabetic’ to describe a part of the body (e.g. the ‘diabetic foot’) or a complication
Diabetes-related complications (e.g. ‘diabetic retinopathy’) has unintended consequences:

173 (2021) 108655

Diabetes-specific complications

It conveys fatalism. For example, the ‘diabetic foot’ sounds like the foot of a person with
diabetes but not all people with diabetes will have foot complications.

It dehumanises the issue. It promotes treatment of the ‘problem’ in isolation from the person
and their needs or situation. It is important to care for the whole person, not just the body part.
The complication and its treatment can affect the person’s mental health, quality of life and how
they manage their diabetes.Diabetes-related foot ulcer’ is more accurate.

7
 8
Table 3 – We can change the way we communicate about managing diabetes.
Instead of. . . Try. . . Why it matters

Adherence/compliance Words that describe Diabetes management requires active, collaborative decision-making, taking into account the individual’s
e.g. adhere, (non–) collaboration preferences and priorities. ‘Adherent’
adherent; comply; (non–) or doing the specific behaviours, is not more suitable than ‘compliant’. The underlying meaning and judgment remains the same. There is no single,
compliant) e.g. taking medication, convenient alternative term.
checking glucose levels It is more appropriate to describe what the person has or hasn’t been doing, e.g. taking medications, checking
glucose, healthy eating, physical
activity. When people with diabetes are viewed as collaborators, this concept becomes irrelevant.The language of
‘compliance’ and ‘adherence’:

is about obeying the health professionals’ instructions.

diabetes research and clinical practice

implies that the person’s diabetes would be better managed if only they would follow the medical advice.

assumes specific instructions are given and understood, e.g. the number and timing of glucose checks.
Health professionals do not always give consistent advice and may even contradict each other.

assumes the health professional’s guidance is suited to the person’s situation, that they agree
to the plan, they can recall it clearly, and are able to implement it.

tells us nothing about the person’s challenges, e.g. misunderstandings, forgetting, side effects,
affording medications, inconvenience, other priorities.

implies that people who do not ‘comply’ or ‘adhere’ are irresponsible, uncooperative, to blame.
It removes clinician accountability. It is judgmental and stigmatising.

stifles curiosity about the person’s challenges, health and well-being. The health professional
using the term rarely looks beyond blaming the person (and hardly ever to their own behaviour)
to identify solutions.

appears to convey a simple message, but that does not make the communication accurate,
effective, empathic or efficient.
Cheating Making choices/decisions We all need a break or a treat from time to time. If we view this as ‘cheating’, then we feel guilty and ashamed that we
‘Being a bad diabetic’ are not
doing what we’re supposed to do. It’s hard to shake off those feelings of failure. Instead, it is better to enjoy the break
or treat

173 (2021) 108655

and feel good about this as a positive choice.
Uncontrolled Manage glucose levels Diabetes management and glucose levels are influenced by many things outside a person’s ‘‘control”, e.g. hormones,
or controlled diabetes Within/outside target range illness,
Control High/low glucose levels stress, heat, other medications. Referring to diabetes or glucose ‘control’:
(when referring to Target glucose levels
can leave people with diabetes feeling guilty, anxious and/or frustrated.
diabetes, HbA1c or
infers a moral judgment, i.e. the person has been ‘good’ or ‘bad’.
glucose levels)
is unrealistic with the current treatments and monitoring available to most people with
e.g. diabetes.Instead, it is more supportive to:
poor control, good
refer to managing diabetes or glucose levels.
control, normal control,
acknowledge any improvements in diabetes management or glucose levels.
well controlled, poorly
recognise the person’s efforts.Referring to ‘normal’ glucose levels implies that levels outside
controlled, uncontrolled this range are ‘abnormal’. It is more appropriate to refer to glucose levels being within or outside the target range.
Table 3 – We can change the way we communicate about managing diabetes.
Instead of. . . Try. . . Why it matters

Correct(ing) glucose Adjust(ing) insulin Used as a verb, ‘correct’ conveys the idea that something is wrong, an error needs to ‘fixed’. This can leave people
levels Optimising glucose levels feeling guilty
or anxious, like they are continually chasing the ‘perfect’ glucose level. Instead, we can refer to adjusting insulin.
Fail, failing to, failed, Did not, has not, does not. . . People do not fail their medications. If anything, the medication fails the person. If something is not working, we can
failure choose/try another option.
e.g. ‘he failed on There is no need to blame/judge the person. ‘Failure’ can imply ineffective efforts or lack of effort. It expresses
metformin’ disappointment and can mean
the end of hope. Feeling like a failure can deter the person from further efforts.
Good/bad/poor Numbers ‘Good’ and ‘bad’ are value judgments. Instead, use neutral words that focus on the actual glucose levels, biology or
Choices task/action.

diabetes research and clinical practice

Intensify/escalate Tailor/personalise/change The language around changing medications and doses of medications can be scary. ‘Treatment intensification’
treatment to more effective or appropriate treatment(s) sounds burdensome,
and ‘escalation’ suggests a crisis. All diabetes is serious but fear is rarely constructive. This is because the most
common response is to avoid
the situation causing the fear to avoid feeling scared, while the problem remains.
Should (not), have to, You could try/consider . . . The individual is an expert in his or her own diabetes. Giving instructions about what s/he should (or shouldn’t) do
can’t, must (not) Let’s consider your options. . . implies that you know better.
You could choose to. . . Not following the instruction renders the person as uncooperative. Suggesting options emphasises the person’s
choices, recognises his/her autonomy
and that s/he has ultimate responsibility for his or her own health.
Test(ing) Check(ing) ‘Tests’ remind people of being at school, taking tests and exams. For many, this is not a happy memory. Tests have
e.g. glucose Monitor(ing) e.g. glucose ‘results’, often with a ‘pass’ or ‘fail’. How many times each day do people do a glucose ‘test’ and feel like they are
‘failing’ when they see a level (above or below target) that they interpret as ‘good’ or ‘bad’?The reality is that people
with diabetes need to ‘monitor’ their changing glucose levels. It is more constructive to use words like ‘check’.
‘Checking’ is an enabler. This gives the person useful information to help them to decide what to do next, e.g. Do I
need some insulin to lower my glucose level? Do I need some carbs to avoid/treat a hypo? Am I safe to drive?
Treating diabetes Managing diabetes ‘Treating diabetes’ or ‘treating patients’ implies something done to the person or their diabetes. It ignores the active
Treating patients role of the person in self-managing their condition. ‘Managing diabetes’ enables the person with diabetes to actively
engage in decision-making and management of their own condition.

173 (2021) 108655

9
10 diabetes research and clinical practice 173 (2021) 108655

We recognise that words have power. They affect our shifts take time. Often, people don’t realise their words
thoughts, and influence our attitudes and our behaviours, are inappropriate, so it is helpful to point out why it is
as well as those of other people. not OK, and why you are suggesting the change.
We can all benefit from thinking carefully about our words,
Don’t just accept it, change it – if you read words that are
how they may be heard and understood by others, and the inappropriate, and you have the opportunity and influ-
impact they may have. The words in Tables 1–3 are just exam- ence, then change it.
ples and do not cover all situations. It is not about creating
Focus on the behaviour and avoid labelling – remember
lists of ‘good’ and ‘bad’ words. Context, attitude and body lan- to be respectful, assume the person meant no harm,
guage are all important. and be constructive in your critique.
When you are unsure, remind yourself of the guiding prin-
Appeal to the person’s better judgment – e.g. ‘‘I’m sure you
ciples (see Box 1). It can also be appropriate to ask the person didn’t mean to suggest. . .”, ‘‘Perhaps you haven’t thought
about their preferences. about it before, but. . .”
3. Remember, our words have power
4.3. Small change, big difference
Communication is something we all do, every day –
small changes make a big difference.
‘‘Excluding negative words could be a simple and inexpensive
Communication is the area where we all have the least
way to avoid negative outcomes” Jane Dickinson training – we can all practice use of new words and lan-
Read the examples in Box 2 and think about: Which one is guage – it may seem to take more time but soon it flows
more accurate? Which one provides more information? How smoothly in conversation and writing.
does each one makes you feel? How could they make a person
Communication needs careful attention – but its not
affected by diabetes feel? Our words matter. What change ‘rocket science’ either. We can all do better in communi-
could you make today? cating about diabetes.

We all make mistakes – aim for progress, not perfection.
4.4. Let’s change the conversation
‘‘No matter what anybody tells you, words and ideas can
Changing the conversation is not easy. It takes time and it change the world” John Keating, Dead Poets Society
won’t happen automatically.
Diabetes Australia started changing the conversation in
Contributors
2010, and the following year, we published the world’s first
position statement calling for ‘‘a new language for diabetes”
JS, TS and RS co-developed the first draft based on the original
[44]. In 2012, we published a fully referenced version in this
2011 position description, and subsequent drafts based on
journal [45]. Subsequently, similar statements have been pub-
feedback from co-authors TD, TB, GK, CL, GJ, as well as the
lished by the International Diabetes Federation [46], and dia-
feedback received during consultations with the organisa-
betes organisations in the USA [47], UK [48], India and Canada
tions listed in the Acknowledgements. All authors approve
[49]. In addition, several editorials and commentaries have
the final version.
highlighted the importance of changing the conversation
[50,51].
Declaration of Competing Interest
Changing the conversation is possible, and it is powerful.

The authors declare that they have no known competing

1. Start with yourself
financial interests or personal relationships that could have
appeared to influence the work reported in this paper.
a) Be aware of the words you use every day and take your
language seriously – language is personal and so is diabetes.
Think carefully about how your words might be heard and Acknowledgements
understood by others. Be aware your words may not be inter-
This work was supported with funding from Diabetes Aus-
preted the way you intend.
tralia. This position statement was prepared:
b) Remember that language reflects attitude – do not use
- in collaboration with the Australian Centre for Beha-
words when talking or writing about people with diabetes that
vioural Research in Diabetes (ACBRD), a partnership for bet-
you would not use when talking with them.
ter health between Diabetes Victoria and Deakin University.
c) Choose to create new habits – you may need to make
The ACBRD supported the design and analysis of our survey
conscious, deliberate choices. Choose to be respectful and
and provided valuable feedback on earlier drafts of this
inclusive, not stigmatising and exclusive.
statement. In particular, we thank: Dr Shikha M Gray, Jen-
d) Be aware that we all have unconscious biases – but try
nifer Halliday, Dr Christel Hendrieckx, and Dr Elizabeth
to minimise these.
Holmes-Truscott.
- in consultation with: Australian Diabetes Educators Asso-
2. Have the courage to call out inappropriate words and
ciation, Australian Diabetes Society, Diabetes NSW&ACT, Dia-
language
betes Queensland, Diabetes Tasmania, and Diabetes Victoria.

Don’t just accept or ignore it, challenge it – if you hear or
- in response to the feedback received from 751 partici-
read words that are inappropriate, make your views clear.
pants in our online survey (2019).
Speaking up is a way of changing the culture. Cultural
 diabetes research and clinical practice 173 (2021) 108655 11

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