If you google the words ‘diabetes public health campaign’, you will find myriad offerings from around the world. There are the good, the bad and the outright ugly. (Click on links at your own peril.) And many of these campaigns are the foundation of broader messaging about diabetes. 

Why is it so hard to get messaging about diabetes right, and how do we fix years of getting it wrong? 

The vast majority of type 2 diabetes messaging focuses on personal responsibility. It could be about losing weight, losing centimetres off your waist circumference, eating more fresh fruits and vegetables, being more active … you name it, it’s up to YOU. 

It’s not just type 2 diabetes. Messaging aimed at addressing specific diabetes-related complications for all brands of diabetes also has a strong focus on personal responsibility: get screened/talk to your HCP/don’t miss appointments/don’t bury your head in the sand/look after yourself. The implication is that all accountability lies at the hands of the person with diabetes. 

There are so many assumptions and that is one reason the messaging really hasn’t worked. There are more reasons, of course, and these are complex, multifaceted, and convoluted. You can almost understand why going with the easy ‘fix yourself’ messages are the ones that have been used. 

The thinking behind so much of what we think and do about diabetes is misguided because too often we look to apply solutions that are medical in nature when we need to be considering social solutions. In a recently published New York Times article, writer Roni Caryn Rabin suggested a need to reframe (type 2 ) diabetes ‘…as a social, economic and environmental problem, and offer[s] a series of detailed fixes, ranging from improving access to healthy food and clean water to rethinking the designs of communities, housing and transportation networks.’

Telling people to eat better without establishing if there is affordable fresh food available and affordable, and the knowledge for what to do with a box from a farmers’ market, or to walk for half an hour a day without first asking about safe and accessible walking paths, leaves out a very big part of the equation. Assuming people have those structures in place is naïve, and yet that is what is assumed time and time again. 

And telling people to not miss screening appointments lest they develop a diabetes complication is perfectly sound advice. Provided there are health professionals available, accessible, and affordable within decent timeframes. It takes only a cursory glance on Twitter to see that people with diabetes have difficulties when it comes to making those important appointments – and, for many, that’s been even worse with COVID.  

Individual responsibility goes only so far when there aren’t the social and system structures around to support individuals. And it doesn’t go anywhere when generic messaging is the only messaging employed with the expectation that everyone will respond, and act as directed. Because there’s no time for nuance in a snappy campaign message.

We see time and time again that vulnerable people are disproportionately affected when it comes to health outcomes. In diabetes, we talk about high-risk groups, but what is the point of that if there are no solutions that are targeted for specific cohorts? Plus, if the at-risk messaging is thrown into the mix of the ‘fix yourself’ messaging, it gets very murky. Are people also now meant to be personally responsible for their backgrounds, age, family history…?

Messaging doesn’t only live on the websites and socials of those creating them. There is often a PR machine behind them that does its dark PR arts magic to get the message out there beyond those confines. News outlets pick them up and run, run, run with the messaging, dumbing it down to soundbites that often focus on anything that will get cut through. And often that’s the ‘fix yourself’ messaging. 

And of course, the flow on effect of that is more blame, more shame, more stigma, more misinformation, more judgement, more discrimination. More people in the community not familiar and intimately connected with diabetes believing they’ve learnt something new, but really, they’ve probably only added more about how lacking people with diabetes are when it comes to personal responsibility. And on they go to perpetuate the myths about diabetes and personal responsibility. 

The times the messaging is right is when people with diabetes are directly involved in developing and finessing it. We can predict the ramifications of messaging gone wrong because we’ve been on the receiving end of it. There’s never not a good time to engage people with diabetes, and I’ll always, always advocate that. It’s good policy because #NothingAboutUsWithoutUs.

But in the case of developing messages about diabetes, engaging people with diabetes can reduce harm to us. And surely that should be the starting (and middle and end) point for anyone doing anything about diabetes.