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
AVOID |
USE |
RATIONALE |
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 |
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. |
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. |
