Our new research shows that 97% of people from South Asian, Black African and Black Caribbean communities in the UK have experienced some kind of diabetes-related stigma.
This finding compares with to 89% of the wider diabetes population who have experienced diabetes stigma. The findings show that urgent change is needed to tackle stigma and its impact on all people living with diabetes.
Diabetes stigma has a deeply personal impact for people with diabetes. We define it as negative attitudes, behaviours directed towards someone because of their diabetes, or perpetuating stereotypes and misconceptions that have a harmful impact on people living with diabetes.
This is why we are working to change how diabetes is perceived in wider society.
How our research was set up
Our research followed up from our work in 2023, where we discovered that over 50% of people living with diabetes miss healthcare appointments at least sometimes due to stigma.
We conducted interviews and a survey with people from South Asian, Black African and Black Caribbean backgrounds (Global Majority communities) to understand the different experiences they encountered, and the impact this had on their daily lives.
We carried out 24 in-depth interviews with people living with type 1 diabetes or type 2 diabetes, and 16 of our interviewees also completed a follow-on diary where they noted other stigmatising experiences they had in the days after their interview.
We used their responses and their words to create a survey that over 400 people completed. The questions were based on real world experiences, and we also repeated some of the questions from our 2023 work to allow us to compare experiences across the two groups.
What our research found
We discovered that three quarters of people had experienced comments from friends or family members about using food substitutions and how this made their cooking “inauthentic”.
We also heard that 80% of people had experienced someone speaking for them, or making “excuses” on their behalf at social gatherings.
One in five people told us they had experienced stigma in a healthcare environment, and almost half had this experience at least monthly.
In addition to this, almost half of people said they’d missed a healthcare appointment due to stigma. While this was less than our 2023 report (46% vs 56% in 2023), what came through in this report was that people would often avoid being completely transparent with what they told a healthcare professional – especially when it came to conversations about weight, food or physical activity.
We heard that 74% had hidden their diabetes diagnosis from friends, family members or new people they met for fear of being stigmatised, and 83% of people from Black African communities had not told their employer they live with diabetes due to perceived likely discrimination.
We also often heard that people felt under pressure to take alternative remedies or “cures” in place of their prescribed medication, which could have serious consequences. When these approaches failed, people were blamed for “not trying hard enough” or “not taking enough”.
What it’s like to experience diabetes stigma
A South Asian woman living with type 2 diabetes told us:
‘People in the wider community like my friend's mother or an auntie, they start telling me “you should try this” or “we have seen people trying this remedy and they cured themselves”.’
And a Black Caribbean woman, also living with type 2 diabetes said:
‘A lot of the judgement or the anxiety about being diabetic came from the healthcare professionals, and I don't know if that's the tactic they do to scare people into some kind of action. But I think for me, it had the opposite of, kind of just keeping me numb to everything.’
Things need to change
These experiences have a significantly negative, long-term impact on people’s physical and mental wellbeing. We know that too often people are shouldering unjust blame and shame that is unfairly associated with their diabetes diagnosis.
At Diabetes UK, we are working to influence government and healthcare systems to address the harmful stigma that people experience. We’re doing more to reinforce the rights people have at work so that they can confidently tell employers about their health and get the proper support to attend medical appointments.
We plan to launch our Manifesto For Change later this year which will show how we can tackle these systemic issues once and for all.
All our work is driven and informed by the lived experiences of people affected by diabetes who are vocal in their desire for change, and we’re committed to standing beside them.
This research was carried out independently but was made possible with a donation from Abbott.
