Renza Scibilia, a diabetes patient advocate from Melbourne, Australia and Chris Aldred, known as the Grumpy Pumper and from the UK, have written about how feeling “blamed and shamed” for having diabetes complications leaves people feeling unable to talk about them.
They posit that certain information regarding diabetes complications attaches blame to people who have failed to manage their diabetes “correctly”, and this language needs to change.
“Complications are a reality for many people living with diabetes; and the possibility of complications is present all the time,” they said.
“Changing the language used from ‘complications’ to ‘care’ can perhaps reduce the fear and turn the focus to risk minimisation. If choice of words focused on care, people with chronic conditions such as diabetes would be more engaged with their own care and feel more supported. They would then feel encouraged to work with their healthcare professionals to minimise the risk of complications, and to treat early and effectively those that do occur.”
Last year, using social media and the hashtag #TalkAboutComplications, Chris told the story of his foot ulcer diagnosis, and received a huge response from others sharing their stories. He noted how a recurring theme was feeling “blamed and shamed”.
“A subtle change in the way words are used could make a difference,” said the authors. “Often the focus and language around complications are on prevention rather than on risk reduction. The understanding is that no matter how well a condition is managed, there is always some risk that a complication could develop.”
Last year, Judith Hendley, Head of Patient Safety Policy at NHS Improvement, wrote about how the way healthcare professionals talk to people with diabetes need to change. She wrote: “It troubles me to be referred to as a ‘diabetic’ or for people with diabetes in general to be called ‘diabetics.'”