Diabetes patients battle blame, shame and judgment over medical condition

For people with diabetes, everyday language can carry a weight of judgment and stigma.Lifestyle choices. Sufferer. Burden.Those words, among others, have come up again and again during Dr Liz Holmes-Truscott's 16 years of diabetes study.As the deputy director of the Australian Centre for Behaviour Research in Diabetes, she told RNZ they were used by the media, by the public, by people's families, even by doctors."Diabetes stigma occurs when people with diabetes - those at risk of the condition or even those connected to it in different ways, such as health professionals or those caring for people with diabetes - when they're negatively labelled, stereotyped and separated, due to diabetes," she explained.Of more than 365,000 New Zealanders living with diabetes, 80 percent report facing blame, shame or judgment, according to Diabetes New Zealand.Holmes-Truscott explained stigma could look like overt discrimination, but was often much more subtle - everyday assumptions, comments, interactions.At a family barbecue, it might look like this: "You don't look like a person with diabetes" or "Should you be eating that?"At a doctor's appointment, it could look like this: "Have you been taking your medication correctly?"Research had shown some patients were even reluctant to share their glucose levels with their doctor for fear of being judged, blamed or shamed, Holmes-Truscott said, which could get in the way of effective care.A 2024 study in The Lancet, which Holmes-Truscott co-authored, found four in five adults reported experiencing diabetes stigma.A separate 2026 research review found people reported delaying appointments, disengaging from care, withholding information from doctors and changing self-care behaviour to hide their condition or avoid questions."This isn't about policing every word people use," Holmes-Truscott explained. "Our understanding evolves over time and so does our language."What's important is being willing to listen, learn and use language that respects people's experiences."What's her beef with the word 'lifestyle'?One risk factor for type 2 diabetes is high body weight, but risk is also influenced by factors outside a person's control, including genetics, age, ethnicity and socio-economic circumstances.Still, diabetes carries the label of 'lifestyle' disease."I think it's well long past the time to reconsider this term," Holmes-Truscott said.As well as implying someone was entirely at fault for their diagnosis, it was also unclear."It's not a scientific term and yet it's a term that researchers, that healthcare professionals, that the media really latch onto as a bit of a coverall."If we're talking about physical activity, let's talk about physical activity. If we're talking about food intake, let's talk about that."If we're talking about food access, let's talk about food access. For me, this isn't just about political correctness, it's about communication."When stigma affects carePregnancy brings its own risk of diabetes.During pregnancy, the body needs significantly more insulin and gestational diabetes develops, when it cannot produce enough to keep blood glucose within the recommended range.Health data shows it will affect up to one in six women, with some evidence showing it could be even higher, particularly for Māori and Pacific people.During her own pregnancy eight years ago, Holmes-Truscott experienced firsthand how quickly judgment could land."I received my diagnosis [of gestational diabetes] over the phone from a healthcare professional, who had never met me, who didn't know anything about my circumstances, my situation, and I was told to cut the junk."She said her immediate reaction was one of shock and concern, quickly followed by a feeling she'd done something wrong."There's an immediate judgment around what I'm eating and a suggestion that I need to do better," she said.Her own research on women with gestational diabetes showed her that was not an isolated experience - in fact, it was very common."We know some women with gestational diabetes report a lack of interest in going for follow-up screening," she said.Despite her many years of work with diabetes, Holmes-Truscott said her response to that doctor eight years ago was defensive.She remembered telling them she barely ate junk food as it was."The thing is, what if I do? That's still not appropriate, so I can only imagine for those who perhaps have never heard about diabetes, perhaps don't have that same set of privileges that I have in the healthcare setting, what impact that might have had on them."