Around the world, we are increasingly recognising that the words and images we use to describe diabetes matter. Good communication has the power to provide accurate health information, present diabetes through a lens of public health and empathy that reduces stigma, and make a compelling case for diabetes policies and programmes.
The World Health Organization (WHO) is not immune from this scrutiny. On more than one occasion in recent years, WHO has released information about diabetes that has fallen short of the standards expected by people living with diabetes.
Through WHO’s Global Diabetes Compact, the organization is leading the charge for the meaningful engagement of people with lived experiences of diabetes. In addition to focus groups and informal consultations, WHO recently developed a survey methodology aimed at better understanding how people living with or affected by diabetes see themselves in the media. This includes how people would prefer to be portrayed, and the values and principles for WHO to communicate when explaining the importance of acting on diabetes.
The result of this intensive engagement is a new paper – A WHO key informant language survey of people with lived experiences of diabetes: media misconceptions, values-based messaging, stigma, framings and communication considerations – published on November 14 to mark World Diabetes Day.
I feel like diabetes is portrayed as someone's fault, a disease based on being fat, and often a moral failing. It's ``tragic`` or comedic. Not a chronic life long illness
The paper showcases the results from a survey of more than 900 people in 58 WHO Member States. It finds several themes to consider when communicating about diabetes, explained with their own words.
Respondents most commonly said the media needs to acknowledge that more than one type of diabetes exists. Type 1 diabetes, an autoimmune condition that often develops in childhood, is different from type 2 diabetes. For people with type 1 diabetes, this confusion can leave them feeling stigmatised and blamed for a condition that is not preventable. They felt shamed for “eating too much sugar” or being “lazy.” In some cases, this led to the use of stigmatising language towards people with type 2 diabetes—highlighting a need for empathy and understanding across the diabetes community.
Stigma was a widespread issue for respondents. This arose from limited understanding of the many factors outside of lifestyle that can contribute to type 2 diabetes. In many instances, media representations presented their condition as a joke.
A member of our group once said (they do) not let other people outside her family know that (they have) diabetes... because such people hold on to the belief that people bring diabetes onto themselves
Heartbreakingly, for some people with diabetes, attitudes among friends and family have been shaped to such an extent that they did not feel comfortable disclosing their condition.
The cost of living with diabetes, particularly in countries where there is no universal health coverage, leads to people fearing they will not be able to afford their insulin, and will die.
Hidden behind stigma and costs are the mental health consequences that diabetes can have. Respondents felt that they do not see the impact of living with a condition that requires 24/7 management discussed in the media.
How expensive are the supplies. How expensive is being sick
Reading through the hundreds of responses provided, many people with diabetes felt unjustly shamed and blamed. Respondents wanted to feel understood and respected, and less like they have done this to themselves. Messages that are accurate, supportive and use values-based language of urgency, preventing suffering and taking rights-based approaches, are particularly appreciated.
This study had limitations: respondents living with type 1 diabetes and women were oversampled relative to population size; a response bias arose with many respondents already engaged with the WHO in some way; and the survey was only offered in English and Chinese.
Despite this, these timely findings reflect what many global advocates have long explained: language matters for diabetes.
Mental Health and diabetes are hardly ever mentioned in the media. There is a link between the two and yet this is largely ignored. I can guarantee that if a person is struggling with mental health issues, their diabetes control will not be optimal
Bringing together the ideas of hundreds of people, the paper provides insights to inform how WHO and other organizations can communicate about diabetes and related policies, in an accurate, impactful and empathetic way. By learning from lived experience, we can improve diabetes communication.
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