Diabetes stigma can worsen mental and physical health outcomes for people with diabetes. While efforts to combat stigma in the US are limited, we can learn from Diabetes Australia and Diabetes United Kingdom (UK), which have taken stigma head on, worked to increase awareness, and challenged misconceptions about diabetes.
Over 80% of people with diabetes have experienced diabetes stigma – defined as the exclusion, rejection, prejudice, or blame that people unfairly encounter as a result of having diabetes. No person should feel blamed or shamed for having diabetes – a disease that is largely outside of an individual’s control. While not enough is being done to combat stigma globally, Diabetes UK and Diabetes Australia have taken strides to highlight the harmful impact of stigma and to celebrate people with diabetes in those countries. The US can learn from these examples.
Diabetes Australia – Heads Up on Diabetes and Stigma
In July 2021, Diabetes Australia launched its Heads Up on Diabetes and Stigma Campaign to end diabetes blame and shame. The campaign involves a series of videos that highlight examples of common stigmatizing language such as “Can you eat that?” or “taking better care of yourself.” Diabetes Australia explains that “Nobody chooses to get diabetes – no matter what type of diabetes they have.” The campaign was co-designed with members of the diabetes community in Australia.
Diabetes Australia released a report on diabetes stigma based on survey responses from over 2,000 Australians with diabetes. The following were some of the main findings:
- More than 80% of people with diabetes reported being judged, shamed, or blamed for living with a serious health condition.
- More than 25% of people said attitudes and stereotypes about diabetes have negatively impacted their mental health.
- Nearly 50% of people with diabetes had experienced mental health challenges in the last 12 months.
- 67% of people with type 1 diabetes said they are judged if they eat sugary foods or drinks.
- 52% of people with type 2 diabetes said people assume they are overweight or have been in the past.
“We need to challenge stigma to understand just why it is so problematic for people with diabetes,” said Renza Scibilia, a manager at Diabetes Australia who helps lead its stigma work. “Stopping stigma will hopefully lead to more open dialogue about diabetes.”
Heads Up on Diabetes and Stigma is helping raise awareness among those without diabetes, but the campaign also connects people with diabetes who have experienced stigma with local resources to help support them. The engagement of members of the diabetes community in Australia, Scibilia explained, is why the responses to the campaign have been “overwhelmingly positive” within the diabetes community and beyond.
Diabetes stigma typically stems from a lack of awareness and understanding about the disease, but it can also come from internal feelings of shame and distress. This stigma disproportionately affects those with a higher BMI and A1C and exists everywhere, including within families, at school, in workplaces, and healthcare settings.
Diabetes stigma can be a significant source of stress and can lead to worse individual health outcomes among people with diabetes. Feelings of blame and shame can impact a person’s mental health and make them feel isolated, making it more difficult to manage the disease. Stigma can also contribute to population health inequities due to stigma’s role in the Social Determinants of Health (SDOH). For example, people of color are disproportionately stigmatized in healthcare settings, which may cause them to ultimately avoid seeking healthcare.
Diabetes UK – This is Diabetes
Also committed to combating diabetes stigma, Diabetes UK’s “This is Diabetes” campaign focuses on celebrating people with diabetes and recognizing that every one of them has a different story. The campaign's main objective was to “engage with, and have a positive impact on, people living with and affected by diabetes,” said Lisa Day, Diabetes UK’s assistant director of marketing and communications, “Our hope was that everyone with diabetes would be able to see a part of themselves reflected in the experiences of our inspirational storytellers.”
The campaign is rooted in interviews of six people with diabetes and parents of children with diabetes describing their experiences being diagnosed, dealing with stigma, and feeling empowered:
- This is the moment my life changed – Gina, who has type 2 diabetes, says, “It took me a long time to realize it wasn’t actually my fault. It was something that was out of my control.”
- This is dealing with opinions – Kajaal, a young woman with type 1 diabetes, says, “When it really first affected me was when I went to school and the kids sort of laughed at me. I think that just affected me as I grew up, that there’s something different with the way I am.”
- This is never feeling held back – Jayne and Mike, parents of a young child with diabetes, say, “There’s nothing she can’t do because of diabetes.”
Those interested can also sign up for a newsletter that connects people with advice for living day to day with diabetes and combating stigma. Individuals who sign up also get the “This is Diabetes” ebook filled with tips about living with diabetes.
“Diabetes can be relentless, but it doesn’t have to hold you back from anything you want to do in life,” said Day. To promote this, the campaign aims to “celebrate the determination, strength, and courage of people with the condition.”
Bringing stigma work to the US
Compared to Australia and the UK, which have 5 and 7 percent diabetes prevalence, respectively, diabetes impacts over 10 percent of the US population. An overwhelming number of the 34 million people with diabetes in the US likely experience diabetes stigma, which contributes to worse mental and physical health outcomes. On top of that, a lack of awareness among Americans without diabetes fuels stigmatizing experiences. The US needs to call attention to the harmful impact of stigma on those with diabetes and challenge misconceptions about the disease. We can use Diabetes Australia and Diabetes UK as powerful examples of effective campaigns that can simultaneously combat stigma and support people with diabetes.
diaTribe is working to combat stigma in the US by partnering with our multi-stakeholder dNetwork to develop actionable solutions to this issue. We have surveyed members of the diabetes community in the US on their experiences with stigma and hosted events to raise awareness about the issue. In 2022 we are launching dstigmatize.org – a resource to create understanding, eliminate misplaced blame, and help create a culture of compassion that helps people with diabetes live well with a serious but manageable disease.
No person should feel blame or shame about having diabetes and we are committed to tackling stigma so that all people with diabetes feel supported and empowered.