The conversation around diabetes can be extremely damaging for Australians living with it. MYKE BARTLETT speaks to an Australian academic whose research helps unpack what people think about diabetes and why.
They say you should never read the comments. Professor Jane Speight PhD says it was doing just that — on a 2011 newspaper article about obesity and diabetes — which made her realise just how big a problem diabetes-related stigma can be in Australia. While the article itself was sensible, arguing for governments to get on board with creating healthier environments, the response from readers was anything but.
“I saw literally hundreds of these vitriolic comments towards people with diabetes or with overweight, saying why should we help them when they won’t help themselves?” Jane says.
“It started us thinking about what impact those sort of attitudes might be having on people with diabetes and, well, what could we do about it?”
Jane is the foundation director of the Australian Centre for Behavioural Research in Diabetes, a partnership between Diabetes Victoria and Deakin University, and is also the chair of the PsychoSocial Aspects of Diabetes (PSAD) study group. She has worked in the diabetes sector for 25 years and has written extensively about the impact of diabetes-related stigma.
Jane says that attitudes towards diabetes and people living with diabetes have changed dramatically over the past quarter century and not always for the better. Compared to other conditions such as HIV, mental health or epilepsy, it was once thought that people with diabetes didn’t feel they were being stigmatised. Type 1 was understood as an autoimmune condition and type 2 was associated with ageing. What stigma there was around diabetes used to be connected with having to use diabetes technology in public (blood glucose meters and insulin pumps, for example). Now, it tends to be experienced as a sense of judgement or blame.
“The message is that diabetes can be prevented, which is not true.”
Jane began her study by interviewing people living with diabetes about their experience, without explicitly referring to the idea of stigma.
“We found that four out of five of them told us voluntarily, before we prompted them, that they had experienced some form of stigma around their diabetes, although they didn’t necessarily use that word,” Jane says.
“What they talked about was being blamed or being judged or being treated differently. Some of them talked about being ashamed of having diabetes. It was telling us that there was a big problem.”
Weirdly, part of this change in attitude may have come from studies that helped us understand the difference lifestyle modifications — such as the food we eat and our levels of activity — can make for diabetes prevention. Showing that it was possible to reduce your risk of developing diabetes also meant that people felt they could blame others for not taking the necessary steps — an attitude that is both unfair and unhelpful.
“The message is that diabetes can be prevented, which is not true. It’s not true for people with type 1, or certain rarer types of diabetes, and it’s only true for type 2 in up to 60% of cases.”
“If people don’t feel confident about letting people know they have diabetes, then they delay their medication if they’re in public, they delay their insulin and that’s got consequences.”
This tendency to blame the individual ignores the pressing social factors that are contributing to a rise in diabetes cases, such as the more stressful and sedentary nature of modern life. Jane says media outlets tend to ignore the big picture and focus on the smaller things people “should” be doing to lower their own risk, which can lead to a very unhealthy conversation about diabetes.
“You know, there was an article recently from the UK that showed that the general public weren’t in favour of the government funding diabetes prevention programs, because the public think that people who are at risk of diabetes just need to, you know, show a bit more willpower. Because that’s what the media tells them is causing diabetes.”
What is also missed in media stories is the negative impact on diabetes management for people who feel stigmatised. This is the real danger of diabetes stigma. When people with diabetes don’t want people around them to know they are living with the condition, they can neglect their health.
“If people don’t feel confident about letting people know they have diabetes, then they delay their medication if they’re in public, they delay their insulin and that’s got consequences,” Jane says. “It’s definitely a real challenge in terms of people doing what they need to do to manage their condition well, at the times that they need to do it.”
“It is a multi-layered problem, it’s a systemic problem, it’s a societal problem.”
Certain groups tend to report feeling more judged than others: young women with diabetes, people using insulin or diabetes technology and people whose diabetes management is more visible to others. Older people report less judgement because, as age increases, health conditions become more common.
“What they told us was, everyone’s got something wrong with them by that age. When they sit around with their friends, everyone’s complaining about whatever, whether it’s their hip or their diabetes or their arthritis!”
While this kind of openness about diabetes can help ease the sense of judgement some might feel, Jane says increasing education and awareness can only go so far to change attitudes.
“It is a multi-layered problem, it’s a systemic problem, it’s a societal problem. There’s family and friends and what they know and do to support people with diabetes, there’s what goes on in workplaces or in schools and there’s what goes on in the media and how diabetes gets reported.”
“The way we change the narrative is to get better conversations going on in the media and better conversations going on in the general public.”
Jane’s research into the area has been taken up by the diaTribe foundation in the US, who have used it to guide their dStigmatize website, which launched last year. It’s a relationship that will develop further in the months and years ahead, Jane says, with an official partnership to tackle diabetes stigma recently announced. It promises to be a powerful blend of advocacy and academic research.
She has also been working with Australian diabetes organisations around messaging that is intended to be less focused on prevention and more on building empathy.
“You know, it doesn’t matter what type of diabetes you’ve got, no one has asked for that condition,” Jane says. “There are plenty of people walking around with risk factors for diabetes who don’t have diabetes, so you can’t just say people with diabetes were asking for it. I think that the way we change the narrative is to get better conversations going on in the media and better conversations going on in the general public.”
“Why do you feel the need to tell someone else that you think they shouldn’t be having that piece of cake?”
While there may be no easy cure for stigma, what can help is for people without diabetes to realise they don’t really understand what it might be like to live with the condition. In other words, to realise they are in no position to judge.
“People need to appreciate that they don’t know all there is to know about diabetes, and they shouldn’t really judge someone else for what they may or might not be doing to manage their condition,” Jane says.
“Why do you feel the need to tell someone else that you think they shouldn’t be having that piece of cake? They know what they need to do for their diabetes, and it’s their choice to do that. They’re perfectly capable of making that choice without you telling them what you think they may or may not need to do.”
Deborah Schofield, general manager of health services at Diabetes WA, says the stereotypes and assumptions that are made about people living with diabetes need to change.
“There are many factors that contribute to diabetes which people, including in the media, simply don’t understand or acknowledge,” Deborah says.
“At Diabetes WA, we are doing what we can to change the script. When you come to an appointment with one of our diabetes health professionals, call the Helpline or attend one of our group programs, you will feel the difference of speaking with people who understand things from your perspective and who are compassionate about the challenges of living with diabetes. That really helps you to feel supported and confident to make some positive goals in areas that are important to you.”