“You shouldn’t be eating that” and “You brought it on yourself” are just two of the comments reported by respondents. “I don’t tell people I have diabetes,” another said.
The diabetes stigma survey, the first of its kind in New Zealand, was carried out by Diabetes New Zealand last year. The results show that most people with diabetes encounter negative attitudes and prejudice that add to the stress of living with their condition.
More than 250,000 New Zealanders have diagnosed diabetes – that’s one in 19 adult Kiwis.
“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 NZ’s Chief Executive Heather Verry.
The findings of the Diabetes NZ Stigma Survey of 824 members reveal a remarkable similarity with Australian findings published previously by The Australian Centre for Behavioural Research in Diabetes.
“Dealing with ignorance and prejudice places a further burden on people who already face the difficult challenge of managing the physical aspects of their condition every day as well as its emotional burden,” says Heather.
What people experienced most was blame and judgement from others. This is an area where we can all help by being more aware of the realities of living with diabetes, and also being more respectful in what we say to and about people with diabetes.
It is clear from the research there is a massive negative stigma around the most common form of diabetes, type 2.
“Given this stigma exists, it’s no wonder many people with diabetes don’t tell others they have the condition,” added Heather. “But this can lead to isolation, loneliness, and people potentially not getting the help they need in a medical emergency.”
68% of people with type 1 diabetes and 40% of those with type 2 reported being judged for their food choices. Some have been left out of social events involving food or drink that other people think they shouldn’t have.
Diabetes NZ says: Managing diabetes is not about avoiding certain foods. The decision of what to eat always lies with the individual, and it’s the job of those around them to provide support, without making decisions for them.
Respondents younger than 65 with type 2 diabetes are more likely to experience negative attitudes. Half of them blamed themselves for having the condition and nearly as many said they feel guilty or embarrassed because of their diabetes. One in three said having diabetes makes them feel “ashamed” or “a failure”.
Professor Jane Speight, Director of the ACBRD, whose Australian research inspired the Diabetes NZ Stigma Survey, 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.
TYPE 1 DIABETES
People with T1D encounter negative responses when they inject in public. Nearly half said they were embarrassed by (48%) or self-conscious (45%) of needing to manage their diabetes in public. More than one in three (38%) said they worry that people think they’re taking illicit drugs when they’re injecting insulin. And 60% of people with type 1 diabetes said others blame them and think it is a result of eating too much sugar.
Diabetes NZ says: There is a common myth that sugar intake causes type 1 diabetes, but of course this is simply not the case. Apart from the emotional stress this causes, it can have very real health impacts if people feel inhibited or discouraged to properly manage their condition in public.
TYPE 2 DIABETES
One in two respondents with type 2 diabetes said that people assumed they are overweight or must have been so in the past.
Diabetes NZ says: 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.
39% of people surveyed said they avoided telling people they have diabetes, to avoid negative reactions. Two in three respondents (66%) with type 1 diabetes also said that people make unfair assumptions about what they can or cannot do because of their diabetes.
Diabetes NZ says: There is no reason people with diabetes cannot perform as well as anyone else and achieve their goals in life. The number of sports stars, performers and leading figures in business, politics and other fields who have diabetes bears ample testimony to this.