I have Been Bold
Yet again I am deeply saddened and troubled by the language used by people with diabetes throughout consultations with Diabetes Insight. Expressions like ‘don’t give out to me’, ‘I have been bold’, ‘I didn’t do what I was told’, ‘I have been bad’ I hear more often than I would like, and they are coming from adults, not kids.
There is no basis within Diabetes Insight for these expressions, I pride myself on providing a non judgmental, respectful, empowering environment for everyone with diabetes, so there is no foundation for any client to think that they are going to be reprimanded and scolded. But is saddens me that grown adults engage with such language because it has been reinforced in them from other situations and environments.
De-Motivating, Inaccurate & Harmful
People are sensitive to the implications of the words and phrases used to describe, categorize and label aspects of their identity; language can define them and their health. Language, and the attitudes it reflects, can affect self-confidence and motivation, and influence health and well-being directly or indirectly. Certain words and phrases can be de-motivating, inaccurate or even harmful. So, it is important at Diabetes Insight when communicating with and about people with diabetes, it is important to us to consider how our choice of language could affect individuals thoughts, feelings and behaviors.
Language needs to engage people with diabetes and support their daily self-care efforts. Importantly, language that de-motivates or induces fear, guilt or distress needs to be avoided and countered. Diabetes Insight believes optimal communication increases the motivation, health and well-being of people with diabetes; furthermore, that careless or negative language can be de-motivating, is often inaccurate, and can be harmful.
Non Compliant, Following Orders
Sometimes, the language used can be inappropriate. Talking about ‘good’, ’bad’, and ’poor control’, people ‘failing’ to adopt certain self-care activities and/or being ’non compliant’ implies that: ‘following orders’ will result in perfect blood glucose levels all the time; the person with diabetes is acting irresponsibly or being ‘difficult’. Use of the terms ‘(non-)compliant’, ‘(non-)adherent’ is particularly problematic. Such terms characterize the individual as cooperative or uncooperative, especially when used as adjectives to describe the person rather than the behavior. Using these labels can mean opportunities are lost to ask relevant questions, develop collaborative goals, tailor treatment regimens and make referrals that actively support the person to manage his or her diabetes. Attempts to increase ‘compliance’ and ‘adherence’ generally involve persuading the person with diabetes to change his or her behavior to fit the health professional’s agenda. Such attempts at persuasion can disregard the beliefs, priorities, preferences, skills and constraints of the individual or their life situation.
For example, individuals labelled as ‘non-compliant’ may simply be exercising their right to make alternative rational decisions that are consistent with their explanatory models, experience, health capability, outcome goals or lifestyle.
Language can Reveal Negative Attitudes
The language used when discussing ‘compliance’ can reveal attitudes that:
- regard the person with diabetes as a passive and submissive recipient of care,
- who should follow the prescriptions of health professionals or services; define the person as ‘weak-willed’ or ‘difficult’;
- dismiss the challenges the person with diabetes faces as he or she tries to reconcile conflicting and contradictory information – received from different health professionals, often within the same team or health service;
- disregard valid choices the person may have made or the complexities of emotions that they may be experiencing, such as anxiety about their diabetes or about the health consultation.
Language can reflect unrealistic ideas about diabetes Much of the language surrounding diabetes is inaccurate when one reflects on the realities of diabetes:
- despite people’s best efforts, diabetes can be unpredictable and very difficult to manage; all people with diabetes go through stages when their own health is not their highest priority or their efforts seem less effective in managing their diabetes;
- diabetes is a progressive condition. In type 2 diabetes, health professionals sometimes use the threat of insulin therapy to try to improve self-care. This threat can create fear and avoidance (psychological insulin resistance) and contribute to a sense of failure when insulin becomes necessary to achieve glycaemic control.
Can language influence outcomes?
Persistent references to ‘failing to control’ blood glucose levels leaves people with diabetes feeling that those around them do not recognize their efforts or that their diabetes can control them. For people with diabetes, feelings of failure, frustration and self-blame are common consequences of unrealistic expectations. Many individuals stop confiding in their health professionals or family members to avoid judgmental or negative responses. At Diabetes Insight we recognize the importance on diagnosis and continuing care of using language that individuals can relate to, understand and feel comfortable with.
Language must not de motivate. Referring to health outcomes and medical results without using concrete terms such as ’control’, ’good’, ’bad’ encourages individuals to think of blood glucose and HbA1c as indicators that continually change in response to many controllable and uncontrollable factors, e.g. hormonal changes, medications, emotions, physical health, food, activity. Language can also create a power imbalance between the health system and the person with diabetes. Over-use of medical jargon can result in distrust of or over-reliance on health professionals who are assumed to ‘know best.
What Do We Do Different At Diabetes Insight?
Diabetes Insight promotes active engagement. Because we specialize in DSME, we more than any other service provider understand the power of language when engaging with people with diabetes. Discussing ‘diabetes management options’ or ‘self management choices’ encourages people with diabetes to be actively involved in making decisions about their own health.
We supports the self-care efforts people make. Health outcomes depend largely on activities and choices people make outside of health consultations. Using respectful and comprehensible language can help individuals realise they are capable of and encouraged to make informed choices about their diabetes, and that their choices are respected.
We also acknowledges the frustrations, anxieties, guilt and distress that many people with diabetes experience.
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