How we're working to tackle diabetes stigma

What is diabetes stigma?

Diabetes stigma can take lots of different forms. It may involve being subjected to a throwaway comment, encountering myths and misconceptions about what diabetes is and what causes it, or it could be negative behaviour towards those living with the condition.

Whatever the source, stigma can have a serious impact on people’s overall health and wellbeing. We know that diabetes can be relentless, and grappling with stigma on top of this makes it even more difficult.

Over the last year, we’ve been listening to the experiences of people affected by diabetes to try and better understand how widespread this issue is – and how it impacts people in their daily lives.

Jim, who lives with type 1 diabetes, says stigma has had both a mental and physical impact.

"In many ways, type 1 diabetes has made me stronger, but at the same time, it has completely beaten me," says Jim. 

We’ve heard that 89% of people have come across myths and misconceptions about their condition, regardless of their type of diabetes. Just as shockingly, 80% of people have experienced negative attitudes because of their diabetes.

The impact of stigma

People have shared experiences with us that include the breakup of relationships, keeping their health secret from their close family, and even being made to feel like their diabetes diagnosis is their own fault.

We’ve heard that people experience stigma in all walks of life – at work, from friends and family, on TV and in films and newspapers, during appointments with doctors and other healthcare professionals and even from other people living with diabetes.  

While they may not always be intentional, people have told us that the relentlessness of frequent small but hurtful comments becomes exhausting. We have heard that the constant expectation that those living with diabetes should be responsible for educating others about their condition also takes a toll on their wellbeing.

The majority of the people we spoke to experience internalised shame, feeling that diabetes is their own fault. And the same number of people feel they are ‘othered’ – treated as though they are different – or left out because they live with diabetes.  

Worryingly, our research has found that more than 50% of people who experience negative attitudes or beliefs related to their diabetes reported that they have avoided diabetes medical appointments because of stigma. You can read more about this here.

Jim’s story

Jim also told us that he still finds it hard to talk about living with diabetes.

"As a relatively open person and an advocate of people speaking honestly about problems, I still struggle to talk about type 1 diabetes, a condition I’ve had for 22 years. I wonder why I still see it as a weakness. In many ways, type 1 diabetes has made me stronger, but at the same time, it has completely beaten me.

"Diabetes can change your mood, sometimes making you behave aggressively or become lethargic and lose concentration. It comes into my life when I least want it, at work, playing sport, during exams, presenting, on the stage, at a party, meeting new people, you name it. Yet the misconception of diabetes is, “it’s that thing where you have to eat loads, right?” Sometimes, I can't find the motivation to explain the intricate complexities of the condition.

"Other times, I wonder if it's easier to laugh and agree with the silly comment. I feel you have to draw the line sometimes and explain the difficulty of dealing with diabetes otherwise it could take a huge toll.

"It’s ruined relationships I’ve had, and has made me low in mood and ill, but it’s also made me resilient and aware. I’ve had too many ignorant comments to count. Most relate to diet, weight or sugar. I think these get to me most as they are simplifying something so complex. Of course, it’s not malicious; there is just a lack of education around type 1."

Read more about Jim's story. 

Nicki’s story

Nicki lives with type 2 diabetes and says stereotypes are an issue.

"I feel most impacted by the way people look at me. I’m 5ft 4 and weigh 58kg, and I can see them looking at me and trying to process that I have type 2 diabetes. That’s quite hurtful. Mentally it really infuriates me because diabetes is serious, whether it’s type 1 or 2. I never wanted this condition, but I’ve got to live with it, and I do find it really difficult to come to terms with other people’s attitudes about diabetes – especially type 2 – as if this is something I brought upon myself.

"The biggest misconception for me is that people assume you’ve caused your diabetes by having an unhealthy lifestyle or not looking after yourself by drinking and eating too much. Why do people think that’s the case or think it’s OK to make that judgement? It certainly wasn’t the case for me – and I’m not alone in that.

"Even now, I still get people saying in surprise, 'You can’t possibly have type 2 diabetes.' That’s not just friends or family, but also healthcare professionals saying that. So, for me, that is the biggest stigma."

Read more about Nikki's story. 

The results

Over the past 18 months we have spoken to 450 people about diabetes stigma, and they said these were the most common negative assumptions they encountered:

• 33% said that they've experienced people commenting on what they believe you can or can’t do when living with diabetes
• 30% said they felt constantly questioned about their condition
• 27% feel responsible for educating others
• 24% said friends, family and co-workers are either over-sensationalising or completly ignoring their diabetes.

What can we do to tackle stigma?

The first step 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 over which a person may have little to no control. We can then start to challenge conversations that oversimplify what diabetes is and how it’s caused, to start a societal shift.

We also want to better understand how we can support people living with and at risk of diabetes who experience stigma. 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 they encounter.

Finally, we need to do more research to better understand stigma and how we can address it. We’ve opened a call for research proposals that will help us better understand the stigma experienced by people with diabetes and identify strategies to reduce or prevent diabetes-related stigma.

Decisions will be made soon, and we look forward to sharing the outcomes and, later, the impact of the funding.

Misconceptions around diabetes are deeply rooted across society. We know that there is no one quick fix to address diabetes-related stigma, and we’ll need to test and learn how to change the societal stigma.

We look forward to sharing our progress soon so we can tackle diabetes-related stigma together.