Q&A | Advocate says 'shame and blame' still a problem for people living with diabetes
Diabetes Canada president and CEO Laura Syron says there’s plenty of confusion about what diabetes is
Every three minutes, someone in Canada is diagnosed with diabetes.
It's a chronic endocrine disease characterized by sustained high blood sugar levels. It can lead to cardiovascular diseases, nerve and brain damage, kidney failure and even death.
Diabetes Canada president and CEO Laura Syron says there are misunderstandings about the disease and that it often carries a stigma for people who live with it.
She says that needs to change.
Syron spoke with CBC Radio's Newfoundland Morning. This conversation has been edited for length and clarity.
Q: When we talk about stigma and diabetes — and its multiple forms — what exactly are we talking about?
A: We're talking about the negative perceptions, the misinformation and, quite frankly, sometimes the judgment that comes when someone says they live with diabetes. That's really what the stigma is. Often people think it's someone's fault and it's not.
There are many reasons that you might get diabetes, but because there's sort of a general understanding that, "Well, someone gave it to themselves," particularly Type 2 diabetes, or they didn't eat well or they didn't live well in some way and therefore that's why they got it. There then grows this stigma around it and people have a lot of shame and blame around it.
Could it be that people don't realize they're shaming and blaming those with diabetes?
Exactly. And I should tell you that not only am I the CEO for Diabetes Canada, but I also live with Type 2 diabetes. And this has been such a personal experience for me as well. We often say that's policing.
People often mean well but I was recently at my Thanksgiving dinner with my family and someone said, "Oh, we're putting the dessert over here, Laura, because you have diabetes."
And it's like "What?" I'm an adult. I know how to manage my disease. I know what I can eat and can't eat.
And again, it doesn't always come from a negative place and I think people mean well but they often don't understand what diabetes is.
We did a report among people with both Type 2 and Type 1 diabetes that showed, here in Canada, diabetes stigma is real. Seventy per cent of people said they felt shamed and blamed for living with their disease. Almost half of them said they felt they've been treated differently because of their disease. So this is real and we have to change the conversation around it.
Another stat in that report that stuck out to me was 54 per cent of those with Type 1 diabetes say people assume that it's their fault but only 25 per cent of people with Type 2 felt the same way. Were you surprised by that stat?
I was very surprised by that statement because when you have Type 1 it means your pancreas has stopped making insulin so you immediately need to go on insulin.
Whereas Type 2, like what I have — which is what 90 per cent of people with diabetes in Canada have — my pancreas makes it but it's a bit wonky and it doesn't always do it at the right time or with enough gusto anymore. Some people go on medication or insulin.
It's often that Type 2 — where your pancreas is still sort of working with you — that people think, "Oh, that's because you're overweight" or "You haven't eaten."
Type 1 diabetes used to be called juvenile diabetes and I think there is a sense there that, "But wait a minute, you're an adult. How do you have this? You probably ate too many sugar."
It's really a basic mechanism in your body that something has stopped being able to do something and there's so many things that can cause that.
On the flip side, often we hear of Type 2 diabetes being referred to as a "lifestyle disease" — which I imagine then adds to the negative stigma too. How much of a misrepresentation is that?
When I was diagnosed I had to think about what am I eating now, how much exercise am I getting, but there's a genetic component. Was there diabetes in your family? Depending on your ethnicity, there's higher rates of it. Also, it can be tied to stress. It can be tied to socioeconomic factors.
There's almost 70,000 people in Newfoundland and Labrador who live with diabetes. There are things you can do to tackle it, but the reason you may have got it is quite complicated. And it's important to know that it's not your fault.
Almost 60 per cent of people with Type 2 diabetes won't seek support because they've internalized that it's something to do with them. And so they won't get support from family or friends or even their health-care provider.
You really need to think about the fact that it's a complex condition and what are some small steps that I can take to start changing this. Because what we do know is if you seek support you're going to be healthier longer. And that's what we want.
In an op-ed piece you wrote you mentioned something called diabetes distress. What is that?
It's basically the condition that many of us who live with diabetes experience, which is, "Oh my gosh, this disease is never ending."
It's 24/7, 365. I can't ever take a vacation from my diabetes. I have to be thinking about what I'm eating, are there carbs, did I take my medication? Am I having side effects? Am I thinking about the complications? And it's just this feeling of distress, of living with a chronic condition that has long-term complications if not managed well and just feeling this emotional burden.
And that just feels ultimately draining and that's diabetes distress. And it's very important if you're feeling that way about your diabetes, that you're talking to someone.
If you can open up that way, people can learn more about diabetes and then they can be more supportive.
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ABOUT THE AUTHOR
With files from Newfoundland Morning