Over 50% of people living with diabetes miss healthcare appointments at least sometimes due to stigma, according to our new research.
We are investigating the stigma experienced by people living with or at risk of diabetes and how we can support them. Over the last year we have listened to the experiences of people affected by diabetes, to understand how widespread this issue is.
We’ve spoken to colleagues from across the organisation and experts in stigma from across the UK to develop a long-term approach to tackling the issue.
As part of this work, we recently carried out brand new research into diabetes related stigma. We held 16 in-depth interviews followed by participants keeping a two-week diary to share any experiences. We then used these interview insights to help shape a survey sent to 450 people living with or at risk of diabetes.
This research, the first of its kind in the UK, revealed that a startling 89% of respondents have come across myths and misconceptions surrounding diabetes.
Furthermore, almost half (48%) have personally experienced the misconception that diabetes is caused by eating too much sugar. And 20% said they experience stigma from healthcare professionals at least a few times per year.
What is diabetes stigma?
Stigma, or negative thoughts, attitudes and behaviours, towards people with diabetes, is a serious problem which we know many people can experience on a frequent basis.
Diabetes stigma can take lots of different forms, such as throwaway comments or a repetition of myths and misconceptions around what diabetes is.
We received feedback on how the experiences and impact of stigmatising attitudes affected people on a daily basis.
One woman, aged 30 and living with type 1 diabetes, said:
“It’s so ingrained in me from my South Asian background that what I have is somehow ‘bad’ that when I applied for and didn’t get my first graduate job, I just assumed that it was because I said I had diabetes. That really stuck with me and now I never tick the box on the form in case someone judges me.”
And one man, aged 62 and living with type 2 diabetes, said:
“I only talk about it at work when it’s absolutely necessary – I just don’t need people giving me advice or trying to tell me what I should do. I hate the feeling that others are tiptoeing around me and wrapping me up in cotton wool – it’s so frustrating!”
Change is needed
We want to understand the things that people living with or at risk of diabetes perceived as stigmatising, and where those attitudes were most common – for example, with friends and family, in the workplace, through the media or in healthcare conversations.
The first step to making positive change is education. We need to talk more about how diabetes is a complex and serious condition.
Both type 1 and type 2 diabetes are driven by a complex mix of genetic and environmental factors, many of which we don’t yet fully understand, and many which a person may have little to no control. Not only can a diagnosis of any type of diabetes be confusing, but people then learn about the day-to-day impact it can have.
It’s therefore important that we start to challenge conversations that oversimplify what diabetes is, how it’s caused and what it means for people living with diabetes day in and day out, to start to see a societal shift.
Andy Broomhead, Head of Engaging Communities and Volunteering at Diabetes UK, who is sponsoring this work said:
“Our research over the past 18 months highlights the stark impact that stigma can have, ranging from internalising these negative views to avoiding medical appointments.
“We are only at the beginning of this road, and we want to work with people living with diabetes, and their friends, family and colleagues so they feel more resilient and able to challenge negative views and misconceptions.”
This research was conducted independently and kindly funded by Abbott. We will be releasing more information about our stigma research in the near future.