Shaming and stereotyping mean that nearly 40 per cent of Kiwis avoid telling people they have diabetes, the first diabetes stigma survey carried out in New Zealand has found.
More than 800 people with type 1 and 2 diabetes responded to the Diabetes NZ Stigma Survey released today (see findings below) to mark the beginning of Diabetes Awareness Month.
“A shocking number of respondents reported that they have been blamed, judged or treated differently because they have type 1 or type 2 diabetes,” says Diabetes New Zealand CEO Heather Verry.
The survey did not directly ask respondents about whether they felt blamed or shamed by health professionals, but Verry said the study closely mirrored the findings of earlier studies done by the Australian Centre for Behaviour Research in Diabetes (ACBRD), which showed that people with diabetes had been stigmatised by health professionals.
She said the survey showed nearly half of people with type 2 diabetes blamed themselves for their condition and a significant number felt ashamed and a failure.
Contributing to that sense of failure can be the language and approach health professionals take when people are first diagnosed, she said. For example, health professionals, trying to encourage compliance with lifestyle changes, can leave people with the impression that if in the future they need insulin, it can only be a direct consequence of them failing to manage their condition.
“That’s not really helping them… some will require insulin anyway and there can be lots of external factors coming into play into somebody’s condition that impacts on how different people manage their diabetes or how they respond to medication and lifestyle changes.”
Verry added that while weight is one of the risk factors for type 2 diabetes, it is not the only risk factor. “Not everyone who is overweight develops diabetes and not everyone with the condition is overweight.”
Type 2 diabetes has a strong genetic component, with people of Māori, Pacific or South Asian ancestry having a significantly higher genetic predisposition to developing type 2 diabetes compared with their fellow Kiwis. People over the age of 40 are also at increased risk of developing the condition and the risk for women becomes significantly higher if they had gestational diabetes during pregnancy.
Professor Jane Speight, Director of the ACBRD, says that self-blame is rarely constructive. “While we know a lot about the risk factors for type 2 diabetes, no-one knows exactly what has caused a particular individual to develop the condition. People need to focus on what they can do now to live well with this challenging condition, not beat themselves up over what they may or may not have done in the past,” she said.
Verry agreed and added that at the time of diagnosis, rather than criticising how people got there, health professionals should focus on the changes that are needed for people to live well.
She said another particularly worrying finding was that one in 10 respondents felt discriminated at work because of their diabetes. “Even if only 10 per cent are affected, this is an alarming statistic when, barring a medical crisis, there is nothing about diabetes that affects a person’s ability to work.”
Diabetes NZ said the survey highlighted the power of language when it came to talking to people with and about diabetes and the need for greater awareness, education and support.
“Thinking about the words we use will help those with the condition become more accepted and supported,” said Verry. “Given this stigma exists, it’s no wonder many people with diabetes don’t tell others they have the condition. But this can lead to isolation, loneliness, and potentially not getting the help they need in a medical emergency.”
Diabetes NZ Stigma Survey
- 824 of Diabetes New Zealand’s 4,000 members took part in the survey
- 39% of survey respondents said they avoid telling people they have diabetes to avoid negative reactions
- 10% of respondents felt discriminated at work because of their diabetes
- 68% of people with type 1 diabetes and 40% of people with type 2 felt judged for their food choices
- 50% of type 2 respondents said people assumed they were overweight or had been in the past
- Type 2 respondents aged under 65 were most likely to experience negative attitudes
- 50% of respondents with type 2 diabetes aged under 65 blamed themselves for having diabetes
- Nearly half of type 2 respondents aged under 65 said they felt ‘guilty’ or ‘embarrassed’ for having diabetes and 1 in 3 felt ‘ashamed or ‘a failure’
- 60% of people with type 1 diabetes say others blame them and think their diabetes is a result of eating too much sugar
- 66% of respondents with type 1 diabetes found people made unfair assumptions about what they can or cannot do because of their diabetes