Diabetes patients face blame, shame and judgment, and the words used to describe the condition are part of the problem

Three words keep surfacing in Dr Liz Holmes-Truscott's work: lifestyle choices, sufferer, burden. In 16 years of studying diabetes, she says, she has heard them from the media, from the public, from patients' own families, and from doctors.

Holmes-Truscott is deputy director of the Australian Centre for Behaviour Research in Diabetes. She told RNZ that diabetes stigma arises when people with the condition, people at risk of it, or people connected to it, such as health professionals or carers, are negatively labelled, stereotyped and separated because of diabetes.

The scale is large. Diabetes New Zealand says more than 365,000 New Zealanders live with diabetes, and 80 percent of them report facing blame, shame or judgment. A 2024 study in The Lancet, which Holmes-Truscott co-authored, found that four in five adults reported experiencing diabetes stigma.

She says it is often subtle rather than overt discrimination. At a family barbecue it can sound like "You don't look like a person with diabetes" or "Should you be eating that?" In a doctor's appointment it can be a question like "Have you been taking your medication correctly?" Research has shown some patients are reluctant to share their glucose levels with their doctor for fear of being judged, blamed or shamed, which can get in the way of effective care. A separate 2026 research review found people delayed appointments, disengaged from care, withheld information from doctors, and changed their self-care behaviour to hide their condition or avoid questions.

Holmes-Truscott is clear about what she is not asking for. "This isn't about policing every word people use," she said, noting that understanding and language evolve together. What matters, in her view, is a willingness to listen, learn and use language that respects people's experiences.

She does single out one term: "lifestyle" disease. 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 carries the lifestyle label. She said it is "well long past the time" to reconsider the term. It implies a person is entirely at fault for their diagnosis, and it is also unclear. It is not a scientific term, she said, yet researchers, health professionals and the media latch onto it as a coverall. Her alternative is specificity: if the subject is physical activity, talk about physical activity; if it is food intake or food access, say so. For her, she said, this is not political correctness but communication.

Stigma can also reach people at a vulnerable moment. In pregnancy the body needs significantly more insulin, and gestational diabetes develops when it cannot produce 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 rate may be higher, particularly among Māori and Pacific people.

Holmes-Truscott experienced this herself eight years ago. A healthcare professional who had never met her gave her the gestational diabetes diagnosis over the phone, knowing nothing of her circumstances, and told her to cut the junk. Her reaction was shock and concern, followed quickly by a sense that she had done something wrong. Despite her years in the field, she said, her response was defensive. Her research suggests the experience is common, and that some women with gestational diabetes lose interest in follow-up screening. She said she could only imagine the impact on those who have never heard about diabetes or lack the advantages she had in a healthcare setting.

The point for clinicians, journalists and families is a practical one: the words used around diabetes may shape whether people tell their doctors the truth, and whether they come back.