Andy Broomhead and Dani Roe: Diabetes and stigma

Stigma isn’t just one thing, and in fact it can often be very different things to different people. We think about it as a collection of negative attitudes, beliefs or behaviours. The common thread across all stigmatising experiences is that can have a detrimental impact on somebody’s self-esteem or sense of self-worth.  All these things can combine to adversely affect how someone living with diabetes is able to manage their own condition.

We’ve seen that being exposed to stigma for a long period of time can sadly lead to people internalising some of those beliefs and blaming themselves for their condition.

Stigma is a society-wide issue and is partly driven by people’s wider beliefs, biases, experiences and surroundings. To end diabetes stigma, we're going to need to tackle wide-held misinformation right across society. After all, nobody deserves to be stigmatised because of a health condition.

Amelia, who lives with type 1 diabetes talked to us about her experience of injecting her insulin in public:

“Just under a year after my diagnosis, I had an experience with the stigma around injecting in public that has really stayed with me. I was in a café on my own, and got my insulin pen out to inject. I could see a little girl (around the age of 4) looking over at me, clearly interested in what I was doing, which I didn’t mind at all! Then, I did the injection, at which point the girl’s parent tries to shield her and move her away from me. It is possible that they thought I would be uncomfortable with her watching me, but it felt much more likely that they just didn’t want her to see me injecting because they had some level of judgement. This made me much more self-conscious when injecting in public in the following weeks and months.”

Stigma is all too common. Research we carried out showed that 89% of people living with or at risk of diabetes had experience stigma at some point in their lives. Almost half had heard the misconception that diabetes is caused by eating too much sugar and almost 60% believed that blood sugar highs and lows were only caused by their own bad management of food or diabetes treatment.

The impacts of stigma can have serious long-term consequences for people too.  Over half of the 450 people we spoke to said they’d missed a diabetes healthcare appointment at least once due to stigma, with 1 in 5 saying they experience stigma from healthcare professionals at least a few times a year.

Over half of people don’t tell friends and family that they live with diabetes, and hide their condition from new acquaintances, saying it’s just easier for them to avoid conversations altogether. Almost half (49%) of people also told us they’d given up and felt unable to manage their diabetes.

We know that positive and constructive healthcare appointments can play a huge role in helping people live confidently with diabetes, but stigma is turning people away from engaging with their healthcare team, making self-management harder and leading to internalised feelings of blame and shame.

Jane, who is 46 and lives with type 2 diabetes told us about her experience with her dentist:

“While having a routine check-up, my dentist noticed on my records that I have type 2 diabetes. He asked what my last HBA1c result was and I told him it was 53 which I had worked hard to achieve and been told was good control by the nurses. He then tutted and said 'Oh, that's not good'. I felt quite angry that he had even asked but even more annoyed by his response when he didn't even know my situation. I felt really judged afterwards and annoyed that a health professional had made me feel that way.”

People with diabetes tell us that soft skills (1) matter a lot.  Being treated like a person and not a condition and recognising that everyone has a life beyond living with diabetes is hugely important for people.  Making seemingly innocuous comments or someone’s self-management, background or choices can really lower confidence when it comes to attending medical appointments.

At Diabetes UK we’re committed to ending diabetes stigma and ending the misconceptions that surround all forms of diabetes.  As we learn more, we’ll dispel the myths around the causes of type 2 diabetes. Instead, we’ll recognise that the drivers are myriad and complex, and often relate to people’s surroundings and environment, rather than things directly within their control.

We’re working with people living with the condition to make sure we tackle the things most important to them first and create a society where people with diabetes can live full and confident lives free from diabetes

1. Language Matters https://www.england.nhs.uk/long-read/language-matters-language-and-diabetes/