Diabetes stigma and discrimination: finding the right words

Abstract

“I don't want this to happen to anyone else”, Kayla Hanna told reporters following her landmark court victory in July, 2018. Hanna has type 1 diabetes and was awarded £2000 in damages after a judge ruled that her treatment at a Red Hot Chili Peppers concert in Belfast, UK, in 2016, amounted to discrimination. The security guards at the event refused to let her take a bottle of Lucozade energy drink—used by many people with type 1 diabetes to treat hypoglycaemia—into the venue, despite showing them her insulin pack and glucose monitor, and her diabetes tattoo. The case was brought under the Disability Discrimination Act 1995 and had the support of the Equality Commission for Northern Ireland—its successful outcome highlights the need to ensure that the needs of people with diabetes are better recognised and accommodated. Unfortunately, such incidents reflect a more widespread problem—discrimination is a common challenge facing people with diabetes. Earlier this year, the charity Diabetes UK reported survey findings showing that one in six working adults with diabetes felt that they were discriminated against by their employer because of their condition, while more than a third said that living with diabetes had caused them difficulty at work. A quarter of those surveyed said that they would like to have time off work for appointments and greater flexibility with respect to breaks for measuring blood glucose and taking medication; some respondents reported that they had not told their employer that they had diabetes. Active discrimination at work or in social life is the tip of the iceberg of the stigma experienced by people with diabetes. According to findings from research into diabetes-related stigma, people without diabetes do not generally view it as a stigmatised condition, but the experience of those with diabetes suggests that stigma is widespread. Even though the fact that someone has diabetes might not be immediately apparent, physical and behavioural features can be conspicuous and result in social stigma. For example, people who take insulin can feel stigmatised due to the association of injections with illicit drug use. The effects of hypoglycaemia can be mistaken for drunkenness, or for mental illness or epilepsy, which are also subject to social stigma. The association of type 2 diabetes with obesity—and of both with unhealthy lifestyle factors related to diet and sedentary behaviour—can contribute to stigma related to blame and negative stereotyping, due to the framing of lifestyle-related diseases as a matter of personal responsibility rather than the result of complex biological and environmental determinants. Such associations can also affect the stigma experienced by people with type 1 diabetes, due to public misunderstanding of the different conditions, and the tendency of many media outlets not to differentiate between diabetes types. Health professionals have a crucial role, as the way in which doctors and other health workers communicate with and about patients can reinforce or minimise the stigma experienced by people with diabetes. In this context, the increasing recognition of the importance of language used in interactions with and about people with diabetes is a welcome development. In June, 2018, the National Health Service in England published a guide, Language Matters, setting out how health professionals can avoid stigmatising language and encourage more positive interactions with people with diabetes. The work follows in the pioneering footsteps of Diabetes Australia, which published a position statement on language use in 2011, and the American Diabetes Association and American Association of Diabetes Educators, which published a US consensus report in 2017. The use of person-first language is recommended, to avoid labelling people as their condition (eg, “a diabetic”). Terminology that seems judgmental or reinforcing of negative stereotypes, such as “failing”, “control”, and “compliance” should be avoided. Such terms are highlighted as potentially problematic because they can be perceived as judgemental and do not take into account the various factors in people's lives that can impact their diabetes management, nor the realities of living with such a demanding, unpredictable, and relentless condition. Stigmatisation of diabetes can lead to negative psychological outcomes, as well as poorer clinical outcomes. It is therefore imperative that those involved in diabetes care take a leading role in ensuring that people with diabetes are treated as people first, and use language carefully to engender positive relationships, reduce the stigma experienced, and improve confidence and self-care. The right words can go a long way.