Diabetes patients battle blame, shame and judgement over the words used to describe their condition

Eight years ago, during her pregnancy, Dr Liz Holmes-Truscott took a phone call from a health professional she had never met. The caller told her she had gestational diabetes, and then told her to cut the junk. The caller knew nothing about her circumstances or what she ate. Holmes-Truscott, who has studied diabetes for 16 years, says her first reaction was shock and concern, followed quickly by the sense that she had done something wrong.

She now serves as deputy director of the Australian Centre for Behaviour Research in Diabetes, and she describes that call as an example of something her research keeps finding. Even with her expertise, she says, her response was defensive. She wonders what such a remark does to women who have never heard of diabetes, or who lack the familiarity with the healthcare system that she has.

The scale of the problem in New Zealand is large. Diabetes New Zealand says more than 365,000 New Zealanders live with the condition, and 80 percent of them report facing blame, shame or judgement. A 2024 study in The Lancet, which Holmes-Truscott co-authored, found that four in five adults reported experiencing diabetes stigma. She defines the term broadly: people with diabetes, those at risk, and even those connected to them, such as carers or health professionals, being negatively labelled, stereotyped and separated because of the condition.

She told RNZ that stigma can be overt discrimination, but is more often subtle. At a family barbecue it might be "You don't look like a person with diabetes" or "Should you be eating that?" In a clinic it might be "Have you been taking your medication correctly?" Words such as lifestyle choices, sufferer and burden have turned up repeatedly in her work, used by the media, the public, families and doctors.

The consequences reach into care. Research shows some patients are reluctant to share their glucose levels with their doctor for fear of being judged, which can get in the way of effective treatment. A separate 2026 research review found people delaying appointments, disengaging from care, withholding information from doctors, and changing their self-care to hide the condition or avoid questions.

Holmes-Truscott singles out the word "lifestyle". High body weight is one risk factor for type 2 diabetes, but risk is also shaped by things outside a person's control, including genetics, age, ethnicity and socio-economic circumstances. Even so, diabetes is widely called a lifestyle disease. She says the term implies the person is wholly at fault, and that it is unclear as well. It is not a scientific term, she says, yet researchers, clinicians and the media use it as a catch-all. Her alternative is specificity: if the subject is physical activity, say physical activity; if food intake, say that; if food access, say food access. For her, she says, this is not political correctness but communication.

Pregnancy brings its own exposure. The body needs significantly more insulin, and gestational diabetes develops when it cannot make enough to keep blood glucose in the recommended range. Health data shows it affects up to one in six women, and some evidence suggests the figure may be higher, particularly for Māori and Pacific people. Her own research with affected women suggests her experience was common, and she notes that some report little interest in follow-up screening.

She is not asking for every word to be policed. Understanding evolves, she says, and so does language. What matters is being willing to listen, learn and use words that respect people's experiences. Whether clinicians and the media adjust how they talk about diabetes is the thing to watch.