Diabetes has an image problem – and here’s why it matters

Diabetes organisations in Australia are calling for an end to diabetes stigma

By Prof Jane Speight

Would you mind being judged for your food choices? Would you mind being shamed for taking necessary medications in public?

In National Diabetes Week (11-17 July 2021), Diabetes Australia’s Heads Up campaign has asked ‘Would you mind?’ being blamed for a condition anyone could develop?

Many people with diabetes do mind. They experience ‘diabetes stigma’ every day through comments that judge, blame and shame them for having diabetes, for how they manage it, and for developing complications.

Over 1.4 million Australians have diagnosed diabetes. It is Australia’s fastest growing chronic condition. Most of us know someone with diabetes – a parent, a child, a sibling, a friend or work colleague. There are several forms of diabetes: type 1, type 2, gestational (diagnosed during pregnancy), and many more.

No-one chooses to get diabetes, no matter what type of diabetes they have. No-one should be blamed or shamed for having diabetes.

What does our research reveal?

We have partnered with Diabetes Australia to publish a report, ‘Heads Up on Diabetes and Stigma’. It is based on the ACBRD’s published research in this area. This research shows:

      • More than 80% of people with diabetes have been judged, blamed, shamed, or treated differently due to their diabetes.
      • Two thirds of people with type 1 diabetes, and over one third of those with type 2 diabetes, have been judged for eating sugary foods or having a sugary drink.
      • Half of people with type 2 diabetes say people assume they are (or have been) overweight.
      • Half of people with type 1 diabetes say some people assume it is their fault they have diabetes.
      • Many have been shamed for injecting insulin or checking their glucose levels in public.
      • They are also stigmatised by hurtful jokes, and inaccurate remarks about highly sugary foods being ‘diabetes on a plate’.

People with diabetes have told us where they think these myths and misunderstandings come from. For example, how diabetes is portrayed in the media. Articles about diabetes typically show images of unhealthy foods, such as sugary donuts; images of headless or faceless people with overweight or obesity; or people with amputations or other complications.

Further, diabetes campaigns around the world promote the simple message that too much sugar causes diabetes and its complications. Some health professionals focus on what the person could or should have done to prevent their diabetes. They suggest that if they had just ‘tried harder’, or shown more willpower, they would need medications or have complications.

All of this serves to portray diabetes as a terrible condition that terrible people bring on themselves. When, in reality, diabetes is a complex set of conditions that can impact anyone. Diabetes does not discriminate.

What are the consequences of diabetes blame and shame?

When fingers are pointed, they are pointed at real people. First, it affects their emotional and mental health, causing feelings of guilt, shame, anxiety and distress. More than 25% of people say attitudes and stereotypes about diabetes have affected their emotional or mental health.

Second, it affects how they manage their diabetes. People who have been shamed for injecting insulin or checking their glucose (with a finger prick) often avoid doing so in public. Sometimes, they skip or omit necessary injections or monitoring altogether.

Third, it affects long-term health. The impact on self-care can cause high or low glucose levels in the immediate term. Over the longer term, higher glucose levels put people at greater risk of developing serious complications.

Finally, stigma and discrimination can have a harmful impact on relationships, work, travel and other opportunities in life. To avoid negative reactions, one in three people with type 1 diabetes don’t tell other people that they have diabetes. This can lead to loneliness and isolation, which affects both mental and physical health. People have told us that their close personal relationships have ended, they have lost jobs and lost opportunities for promotion.

The consequences are also at a public health level. Diabetes stigma may well affect funding for clinical care, new treatments, and research. In 2017, the US budget director Mick Mulvaney said: “We have plenty of money to provide that safety net so that if you get cancer you don’t end up broke … That doesn’t mean we should take care of the person who sits at home, eats poorly and gets diabetes”. This stigmatising view was expressed despite evidence that many cancers share the same risk factors as type 2 diabetes. People affected by diabetes should expect and deserve better.

So, what can we do to #EndDiabetesStigma?

We know that the media, diabetes organisations, some health professionals and researchers have, in the past, been part of the problem. This week’s campaign recognises that. We are calling on everyone to think again.

Our ‘Heads Up on Diabetes and Stigma’ report offers 10 recommendations to end the diabetes blame and shame.

screenshot of report (10 recommendations)

Most cases of stigma arise because of thoughtlessness or misunderstanding. It is unrealistic to expect everyone without diabetes to know everything about what it’s like to live with diabetes. However, what we can expect from other people is respect, kindness and compassion for those living with a condition that they don’t understand.

During National Diabetes Week (#NDW2021: 11-17 July 2021), and every week, Diabetes Australia and many organisations across the country are asking us all to play our part to #EndDiabetesStigma, and show #SupportNotStigma.
See more about Diabetes Australia’s campaign here:
Heads Up on Diabetes and Stigma
See more about Diabetes Victoria’s campaign here:
Think again. Let’s reduce diabetes stigma

For more about the evidence, read the ‘Heads Up on Diabetes and Stigma’ report.

For more about diabetes stigma, see our blogs here