First-of-its-kind research reveals scale of stigma facing people with diabetes in the UK

New data has revealed the worrying levels of stigma and judgment people with diabetes are facing across the UK.  

The research – which is the first of its kind to be carried out in the UK – found that almost nine in 10 people with type 1 diabetes (86 per cent) surveyed and three quarters of those with type 2 diabetes (75 per cent) experience blame and judgement for their condition in their day-to-day lives.

Carried out on behalf of Diabetes UK and healthcare company Abbott, the new YouGov survey aimed to understand the experiences of people living with type 1 and type 2 diabetes.

The research marks an important step in understanding, at scale, how common misconceptions about diabetes impact those with the condition, helping inform how best to address and challenge diabetes-related stigma.

Highlighting the significant stigma faced by people with type 1 and type 2 diabetes, the survey of 1608 people revealed:

• Nearly three quarters (74 per cent) of those with type 1 diabetes agree that some people make unfair assumptions about what they can and cannot do because of their type 1 diabetes
• A total of 55 per cent of people with type 1 diabetes agree that some people think that they need insulin because they haven’t looked after themselves
• Close to two in five (38 per cent) people with type 2 diabetes blame themselves for having type 2 diabetes.

The survey also highlighted that 53 per cent of people with type 2 diabetes agree that there is a negative stigma around the condition being inaccurately labelled a ‘lifestyle disease’.

This is despite it being a complex condition with many risk factors that people can’t change. Feeling blamed or judged for having diabetes can have a serious impact on people’s physical and mental wellbeing.

Previous research suggests diabetes-related stigma is associated with higher HbA1c levels (average blood sugar levels over 2-3 months) increasing their risk of complications. Stigma also causes some people to avoid their healthcare appointments.

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 even lead to discrimination towards those living with the condition.

The relentlessness of hurtful comments can have a deep impact and lead to people experiencing internalised shame and blaming themselves for their condition.

Colette Marshall, Chief Executive of Diabetes UK, said: “Diabetes is serious, and as well as managing a relentless condition, far too many people are also dealing with blame and judgment. No one should feel judged for their diagnosis.

“We must challenge the harmful myths and misconceptions that fuel this stigma and work together to create a society that offers understanding and support, not shaming and stereotyping.”

Some of the experiences that the charity heard from people living with diabetes included being told that having diabetes is their fault or that blood sugar highs or lows are due to having perceived ‘poor control’ of the condition.

Diabetes UK is working to raise awareness of the impact of diabetes stigma, and to improve public understanding of the condition, particularly around the causes of type 2 diabetes.

The organisation is also commissioning research to look at the specific impacts of stigma on type 1 diabetes and gestational diabetes. The charity says collective efforts to address the language and reporting around diabetes, including accurate depictions of the complex and individualised causes of diabetes, is needed.

Friends, family and healthcare professionals also have a role to play by increasing their understanding of what it’s like to live with diabetes.

In addition, further research is needed to understand how diabetes stigma intersects with other forms of stigma such as deprivation.

Type 1 diabetes is an autoimmune condition where the body produces little to no insulin. No one knows exactly what causes it and it isn’t currently preventable.

People with type 1 diabetes manage the condition using insulin, taken either by injections or via an insulin pump.

In type 2 diabetes, the body doesn’t produce enough insulin or the insulin they produce doesn’t work properly. Around 90 per cent of people with diabetes have type 2. No one thing causes type 2 diabetes. It is caused by a combination of factors. These include your genetics, age, bodyweight and where your body stores fat. The reasons someone develops it will be individual to them.

All types of diabetes are serious and need careful management to reduce the risk of developing complications such as heart attacks, strokes, kidney failure and sight loss. Almost 4.6 million people in the UK live with a diagnosis of diabetes.

If you have been affected by diabetes stigma, Diabetes UK has a dedicated helpline on 0345 123 2399 for all people with diabetes, their family or friends, and people who are worried they might be at risk.

The charity is also asking people living with diabetes to help them tackle stigma by sharing what they think needs to change to create their stigma manifesto for change.