Diabetes Australia: A new language for diabetes

A new statement has been issued from Diabetes Australia. I probably should have posted this in the Australia groups but maybe this could be relevant to people in other countries.

One of my pet hates is to be called a "diabetic". It's not used much here in Australia, but I know it is used a lot in the USA. The statement explains exactly why I don't like being called "diabetic" and goes on to recommend other changes to the language of diabetes.

The complete statement is here: http://www.diabetesaustralia.com.au/PageFiles/18417/11.09.20%20DA%20position%20statement.pdf

If nothing else, hopefully this is thought-provoking.

Of particular interest to me is Table 1, which I've tried to reproduce here:

Examples of language to be avoided, rationale and examples of preferred languages




Diabetic, sufferer, patient

Person with diabetes, person living with diabetes

The term ‘diabetic’ defines the individual as their health condition. It is better to emphasise the person’s ability to live with diabetes. Labelling someone as ‘diabetic’ positions diabetes as the defining factor of their life.

The term ‘sufferer’ is too negative to be used to refer to all people with diabetes. If you refer to someone as ‘suffering from diabetes’, is that really true? Does it have to be true? While some people may find diabetes management and its complications challenging and distressing, not everyone ‘suffers’ with diabetes.

Referring to people with diabetes as “diabetic sufferers’ positions them as helpless victims, powerless to lead a normal life with diabetes. The term ‘patient’ implies the person is a passive recipient of care, rather than an active agent in his or her own self-care. Patients are people, and people are individuals, with their own preferences, priorities and lives beyond diabetes.



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.

Normal, healthy (person, blood glucose levels etc.)

People without diabetes; target, optimal blood glucose

Referring to people who do not have diabetes as ‘normal’ implies that people with diabetes are ‘abnormal’. This is not the case and not the point. Similarly, referring to ‘normal blood glucose levels’ implies that levels outside this range are ‘abnormal’.

Obese, normal weight

Unhealthy, healthy weight

The term ‘obese’ is frequently used to label a person, e.g. ‘he or she is obese’, in a way that frames excess weight as a trait rather than a state. A trait is something we have to live with (like personality), a state is something that can change. Furthermore, with excess weight fast becoming the norm in society, the term ‘obese’ does not convey the message that excess weight puts health at risk. Nor does it suggest to the person that he or she has the power and the means to change this risk factor.

Describing the person (e.g. ‘he or she is ... poorly controlled, cooperative, uncooperative’)

Words that describe outcomes or behaviours (‘his or her blood glucose is high’)

Describing the person rather than the behaviour implies the behaviour will not and cannot change. It has a fatalistic connotation. People with diabetes need to think of HbA1c and blood glucose levels as changing indicators that respond to a variety of factors. When health professionals use such labels, it suggests that they may have given up. Furthermore, it is futile to try to ‘make’ people change their behaviour or self-care activities. Diabetes care requires a collaborative approach, not persuasion or coercion.

Poor control, good control, well controlled (referring to HbA1c or blood glucose levels)

Stable / optimal blood glucose levels, within the optimal range, or within the target range; suboptimal, high/low

Referring to ‘poor’ or ‘good’ control infers a moral judgment about the outcome, i.e. the person with diabetes has been good or bad. No-one needs criticism when things are not going well. Taking the judgment out of the language acknowledges that a variety of factors affect optimal diabetes management, many of which are beyond the person’s control. Furthermore, the individual’s efforts need to be acknowledged regardless of the outcome.

Control (e.g. diabetes control, blood glucose control, controlling diabetes)

Manage, influence

The idea of controlling blood glucose levels is great in theory, as few people would want to be ‘out of control’. However, assuming that true ‘control’ can be achieved dismisses the fact that blood glucose levels are influenced by many factors outside of the person’s direct control (e.g. hormones, illness, stress, prolonged / delayed effects of physical activity, other medications). Continually striving to ‘achieve control’ or ‘maintain control’ is ultimately a recipe for feelings of guilt, despair and frustration when it cannot be achieved. Instead, we need to acknowledge that blood glucose levels can be influenced by the person with diabetes but not expect that they can ever be truly ‘controlled’.

Should, should not, have to, can’t, must, must not

You could consider..., you could try..., consider the following options..., you could choose to...

The individual is an expert in his or her own diabetes. Giving instructions about what he or she should (or should not) do implies that: (a) you know better, and (b) not following the instruction renders the person morally deficient or uncooperative. Suggesting treatment options emphasises the individual’s choices, acknowledges his or her autonomy and that he or she has ultimate responsibility for his or her own health.

Failed, failing to...

Did not, has not, does not...

Failure’ implies that one has aimed and missed the target. It implies lack of achievement, ineffective efforts or lack of effort. It also implies disappointment on the part of the person using the term. It is better in most circumstances to rely on facts and avoid judgments about the facts.

Compliance, compliant; non- compliance, non-compliant; adherence, adherent, non- adherent

Words that describe collaborative goal-setting

The terms ‘compliance’ and ‘adherence’ refer to the extent to which behaviour matches the prescriber’s recommendations. They imply a lack of involvement in decision-making by the person with diabetes. They assume the health professional’s guidance was clear, does not conflict with advice of others, and that the person with diabetes recalls the instruction clearly. They also imply that people who do not comply or adhere are irresponsible or uncooperative. There is no single, convenient alternative term. Diabetes management requires active, collaborative decision-making, taking into account the individual’s preferences and priorities.

Chances (of complications etc.)

Health risks; risk of complications

Complications are not destiny nor are they entirely due to bad luck. Talking about the individual’s ‘chances’ of developing complications suggests the person has no control over his or her future. It dismisses the very real efforts needed to delay or prevent their onset. Focusing on the individual’s actual risk and what he or she can do to minimise it is more pro-active.

Blood tests, testing ‘Treating this patient’

Checking, monitoring, self-monitoring Managing diabetes

‘Tests’ imply success or failure and an end result. Rather, people with diabetes need to monitor their changing blood glucose levels throughout their lives.
Referring to ‘treating this patient’ implies something done to the person rather than the diabetes and ignores the active role of the person with diabetes. ‘Managing diabetes’ enables the person with diabetes to actively engage in decision-making and management of their own condition.

Sorry, the HTML worked in the editing but was trashed in posting, so the borders of the table have disappeared.

I will be either in the minority or the only one with my opinion. I “hate” the awkward ‘person with diabetes’ or ‘PWD.’ The acronym is so close to ‘prisoner of war.’ I am perfectly happy to be called a diabetic, in context. I am never called that when someone is talking about me, in general, as a person. If I tell someone I have diabetes, I may say “I am a type 1 diabetic.” I would never say “I am a person with diabetes” but I may say “I have type 1 diabetes.” If they say, Ah, you are diabetic, then I say yes, I am. Easy. I am not ashamed to be labelled as such because I don’t think it means anything beyond the fact that I have diabetes. It does not define the other parts of me although it actually does affect everything I do.

To me the awkward phrase is the same as saying “person who is Black or Asian or White” or “person who is obese or thin” or “person who loves ice cream” instead of icecreamaholic. To me, and again only to me, it is ridiculous. However, I will try to avoid any appellation when I write messages on this board. If necessary, I will try to say the ridiculous ‘person with diabetes’ because I have in the past used the word diabetic on this board.

I am not in a good mood today. Best friend having a biopsy tomorrow that looks to be a bad situation. No excuse though. I would have this reaction even on a good day!

Oh, You will be glad to know that I have never used the terms compliant or adherent. I preached against them from day one as I taught students how to work with persons with chronic illness.

I probably should have posted this in the Australia groups but maybe this could be relevant to people in other countries.

G'day from Pottsville Beach; just south of Coolangatta.

What Australian groups? I have looked for active groups here but failed. The only one I found with any activity was more to do with counselling than diabetes. Would you mind giving links to the ones you are aware of please?

But before you do, I have to warn you that you may not want me to join, because I disagree quite strongly with the long list of PC terminology from Diabetes Australia and with most of their reasons for that list.

Euphemisms allow denial.

I have no problem at all being called a diabetic. Nor do I care that I can also be called a leakaemiac, a Dad, a bloke, a baldie, a sextagenarian, an Aussie, a hubby, Pop or any of a hundred other terms that are totally accurate and imply nothing other than the truth. We live in the best country in the world (I am slightly biased, but I have also travelled most of the rest of the world too :) ) but we still aren't perfect and I am bloody tired of the thought police in this country of ours trying to tell me what I can say and what I should think.

I agree that some of the judgemental terms such as "non-compliant" on the left column of their list should not often be used by professionals, but that is because they imply judgement of the patient (and I AM a patient when I am seeing my doctor); if the term is accurate in the circumstances then possibly the patient needs a kick up the backside to become compliant. Incidentally, my own doctor has marked me as non-compliant because I refuse to take a statin. I asked him to, because I know how the system works and I don't want him getting in trouble with the AMA if I turn out to be wrong and the ticker stops tomorrow. We both doubt that will happen. He and I understand each other very well.

I quit membership of DA about seven years ago after I wrote this letter to them without getting a response: Diabetes Authorities and Diet. To be fair, I got the same lack of response from the ADA too :)

Their time and efforts would be better spent reviewing their high-whole-grains low-fat dietary advice instead of wasting it on this sort of nonsense.

Cheers, Alan, T2, Australia
Everything in Moderation - Except laughter

We think alike. I qualify my language to the context and forum, but when it comes to the crunch I believe it is better to be clear and accurate than to allow denial by sugar-coating the words.

Cheers, Alan, T2, Australia
Everything in Moderation - Except laughter

I generally only use the term “diabetic” when referring to the group “Diabetics who run Marathons” here. To me, diabetes is a HUGE war made up of MILLIONS of tiny battles. It’s easy to dismiss the semantic arguments as “PC” or “■■■■■■■■” or whatever but to me, avoiding saying “I have diabetes” or “people with diabetes” is one of many important distinctions that can add up to several dozen “wins”/ day in terms of keeping my brain focused.

I like monitoring and managing too. If “Diabetes Austrailia” is as huge of an organization as it sounds like, what are their standards I have always thought it odd that > 6.5% A1C is “the goal” for millions of other people with diabetes. I think the goal should be 4.5 but that you shouldn’t shoot yourself if you don’t make it. If you have the goal of beating every single test, it seems like you’d have a better chance of “beating” the long run odds than if your goal of 6.5% = an average > 150 mg/dl? Even 6.0% is a bit higher than I’d like but I wouldn’t be suprised if a few too many "oopses " got me there sometime. I look at it as luck but I try to “manage” my luck carefully?

I have always used and promoted the term “self-management” of whatever chronic disease or even acute conditions that need the person’s involvement. That is, we usually self manage fevers, colds, minor injuries, etc. In fact, without being too specific, I eventually changed the mind of a dyed in the wool basic scientist at NIH towards a more favorable reaction to the term self management, though it took me several years!! Ideally, we self manage and use wisely the paid advice of physicians, nurses, nutritionists, physical therapists and so on. Hopefully, we work as a full team member with the health care team and vice versa.

I doubt I will ever be able to visit Australia but wish I could. It sounds like a wonderful country. And I know that some of its diabetes standards have been ahead of their time in promoting self management regardless of what they called it.

Hey Alan! G’day from a little north of the border on the Goldy, but ex-Byron! Here’s the link to the Australia group: http://www.tudiabetes.org/group/diabetesinaustralia

I looked at your link and saw that I had commented in Sep 2009!

Acknowledge your opinion, Alan. Mine’s quite opposite in terms of the words used, although I also refuse to take a statin and I do low carb. In the early days I was told that low-carb is really bad. Yeah, right!

It has always bothered me that the very thing that raises blood glucose is so wildly promoted as ‘healthy’. It’s well known that the body can produce glucose from other external sources like around 50% of protein and 10% of fat, and from internal sources, if available.

Since you wrote your article/letter, so much more research has been done, yet the authorities are very slow to change their recommendations. There’s a complexity of politics involved, as I understand it.

I’m not going to be judging for others on how language has an effect on them but I do understand why it must change. I know that for myself, if someone calls me “diabetic” it does irritate. Each to his own, but language can be insulting, degrading and hurtful, and often is. If people are more sensitive in degrees, then reason enough to look at the problem. I don’t see these as euphemisms. I am much more than my disease. I’m sure I’m not alone, hence the reason DA wants to make changes.

Some of the expressions currently used are judgemental and irritating to say the least - to me, but maybe not to you. I’m not one bit interested if a doctor judges me (I couldn’t care less what they think of me, per se), but I am concerned that the judgement may have an effect on my treatment… how they speak to me and if treat me as a person not a disease. When I have to explain to a doctor some of the intricacies of managing T1, they have no right to make any judgements based on their half-an-hour of training in med school. Like the article says: The individual is an expert in his or her own diabetes. I deserve more respect for just knowing more. After 33 years with D, I think I know myself much better than they do. If I consistently followed what doctors have told me to do over the years, I would most assuredly have one foot in the grave, if not two.

I think the document makes several language issues very clear and I applaud DA for doing what they have done because I think it will encourage certain people with diabetes and doctors to understand that they can have a far more effective diabetes management outcome if both are involved in treatment decisions.

That was you at comment #3? It’s a small world :slight_smile:

I’d love to get together some time for a coffee. If you’re interested I’ll be in Ashmore around lunch-time next Thursday to see my periodontist.

Ain’t life great as a senior - I know that doesn’t apply to most T1s - when life revolves around medical appointments…

We’ll have to agree to disagree on PC medicalese, but if we meet I’ll try hard to never call you a diabetic, just a Person With Diabetes; Australianised to Pwid.

Cheers, Alan, T2, Australia
Everything in Moderation - Except laughter