When people hear or see the word “Diabetes” what is the first thing they think of?
It’s usually nothing good, is it! Diabetes has a terrible public image. The perception is that diabetes is something that people bring on themselves, they don’t care if that perception relates only to one type of diabetes, that if people just eat less and move more they would be cured, that it’s preventable and that cake kills.
“Perception of disease is just as important as science and medicine. This is a history lesson in disease awareness campaigns that lead to improvements in treating diseases.”
I’ve been trying to write this post for months, ever since I watched this video (huge thanks to Georgie Peters @georgieclairep for her quick recording) from Renza Scibilia where she responds to comments on diabetes complications. She said, “Diabetes has an image problem but using fear tactics to create awareness does a huge disservice to people living with diabetes.”
Before I go any further into my thought maze I’m making a special request that people with type 1 diabetes take a pause and try to keep an open mind. These are just thoughts but I do feel that this discussion might lead somewhere beneficial for all of us.
We, in the type 1 community, try to protect ourselves from ignorance by distancing ourselves from the type 2 community, and in doing so it seems to reinforce this terrible image of diabetes. While the separation of types is important in condition management and services I sense that it’s doing a disservice to all people with diabetes.
After watching the entire session at the International Diabetes Federation’s conference, I immediately went in search of this TEDTalk that I had watched a number of years ago which explores the history of cancer and HIV stigma and how most disease stigma seems to come from a lack of understanding of the disease.
I knew when I heard this one sentence it was really important to me as soon as I heard it.“Perception of disease is just as important as science and medicine. This is a history lesson in disease awareness campaigns that lead to improvements in treating diseases.” She shares how awareness campaigns to address the stigma lead to a huge increase in funding for research for both of these diseases.
What if we created an awareness campaign to address the huge stigma in diabetes, specifically type 2 diabetes, and this led to a huge increase in funding for research and care delivery for all?
I hear the gasps in the type 1 community and shock but I ask you again to please keep an open mind and discuss.
Changing Perceptions
What if we focus on challenging stigma?
What if we could create a diabetes awareness campaign that doesn’t separate us into types and addresses the stigma? Next question “How?”
How would we create a public image that challenges diabetes stigma? Organisations have been creating diabetes awareness campaigns for decades, much more skilled and very smart people have been involved but I still feel we are really struggling with this and it’s not really working. So maybe we could try thinking outside of the box? I’ve had a head start on this so I’m going to share some of my thoughts to get the conversation started. Here are my “What if’s”.
What If:
We focused on the “What” and not the “Treatment/Management”
What if our explanation of what diabetes is started with: Food is fuel to nourish our bodies for survival. No food, no survival! Diabetes is a condition where food can’t be turned into fuel because that process is broken.
Diabetes is a condition where food can’t be turned into fuel because that process is broken.
What if we explained Diabetes as a condition where food can’t be turned into fuel because that process is broken. What if we could find a way to explain what diabetes is in one sentence rather than how it is treated and why it is treated that way? I know, it might seem like a disservice with such a complex condition but it’s totally not what people would be expecting so maybe we have their attention.
What if we focused on the Broken body?
What if we focused on the broken part? I’ve tried to explain diabetes using what I’ve read on diabetes organisation’s websites: starting with high glucose, why that’s bad, then different types, then explain insulin but I’ve already lost my audience totally before I get to insulin. It just seems like I’m a unqualified biology teacher, which I am.
I’ve only used the explanation of diabetes as a condition where food can’t be turned into fuel a couple of times but both those times it’s been met with a lot of surprise, it totally wasn’t what people were expecting, and engagement. Then, I follow up with where the glucose comes from (i.e. not just sugar) and move towards explaining insulin, etc. I usually don’t have to explain the different types of diabetes until I get to the broken insulin.
I know this is a very basic concept and doesn’t fully explain our condition but would this lead to an effective awareness campaign to address stigma?
What If, we start a think outside the box conversation?
There are a couple of my “What if’s”, I did have a couple more but I decided to leave there for now. I would really love to be able to start a conversation and to discuss how we can come up with a diabetes awareness campaign that doesn’t separate the community and that addresses the stigma for all or us.