Diabetes and stigma – “How do you explain that as a mum?”

An interview with Professor Katharine Barnard-Kelly, Co-author of the DRWF leaflets on Sexual health and diabetes for men and women

If you are living with diabetes, you may very well have experienced ignorant, condescending or simply rude comments, not only from the public and even family members, but also possibly professionals who we would hope know better. Stigma can manifest itself in many ways.

As part of a two-part feature for the DRWF Living with Diabetes podcast series we look at the question of stigma in diabetes, including interviews with people living with diabetes and healthcare professionals and the different perspectives they bring to the conversation.

Living with Diabetes: The impact of stigma is real and remains a big issue with much more education needed. From a psychological perspective, it is a real challenge.

Professor Barnard-Kelly: “I think diabetes stigma can be kind of summed up really, around negative prejudice, negative social judgements, stereotypes. Appropriate perceptions of people based on image or theories of disease blame-type stuff. Lots of blame, lots of shaming, lots of negative stereotypes and just general meanness, to be honest.”

Thinking about areas covered in the Diabetic Medicine report and the areas you have looked at such as depression. If person-reported outcomes are not taken into account in clinical care, how does this impact on therapy and long-term glucose control and long-term complications?

Professor Barnard-Kelly: “If people’s personal reported outcomes, people’s priorities, their concerns aren’t taken into account, we’ll continue to get more of what we’ve already had. So the majority of people with diabetes will continue to live with suboptimal glycaemic outcomes and poor quality of life. It will continue to be unaddressed in routine care as it is now, and it will continue to be a cost to the NHS if you don’t have good outcomes throughout your journey with diabetes; your risk of complications is considerably higher, and we know that 80% of the NHS budget is spent on treating largely preventable complications. So that is not just a dollar amount. You can quantify this in the number of pounds. But this is like there are millions of people living a poorer quality of life for no good reason.”

As a parent to a child with type 1 diabetes, is stigma different for people with type 1 and type 2 diabetes? And if so, what does that look like? Not just for the individual but for the parent as well.

Professor Barnard-Kelly: “I think stigma is a terrible thing for all people with diabetes. I think people focus in on different things.  There is a huge amount of ignorance in society at large about what diabetes is, which I think is unfortunate, but, as my son was growing up with diabetes, I had already worked in diabetes for a number of years. And then at the age of four, my son was diagnosed with type 1 diabetes. I was really shocked. I was shocked that the school would not look after him.  They would not allow him to eat in front of the other children in case he had a fit. It’s like, seriously, he is more likely to turn green and eat all the other children. What do you think he’s going to have a fit for? He was not allowed on school trips, for example. Other parents did not want their children to play with him, because they did not know how to look after him. I do not think it was malicious, particularly, but it’s ignorance and it is hard when you are four, being the only child in the class that is not invited to a birthday party because your pancreas doesn’t work. How do you explain that as a mum?”

Living with Diabetes

Listen to the interviews in full as part of the DRWF Living with Diabetes podcast series

This latest edition of our podcast Living with Diabetes was supported by Abbott.

Living with Diabetes is a Blue Aurora media production for DRWF. Copyright 2024 Diabetes Research and Wellness Foundation. All rights reserved.

This article was produced as part of the DRWF Living with Diabetes podcast series and appeared in the Autumn 2024 edition of Diabetes Wellness News. To subscribe visit here