Opinion: It’s time to eliminate the stigma attached to diabetes

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The federal government’s decision to cover diabetes medication and devices under its new pharmacare plan is a significant step forward in improving the quality of life for the millions of people in Canada who live with diabetes, especially those who struggle to afford treatments.

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But access to medication and devices is not the only factor affecting the well-being of those living with diabetes. That title may be reserved for something we don’t often like to talk about — the stigma that can surround diabetes.

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There are damaging misconceptions about diabetes in all corners of society and many judgments can accompany a diagnosis. Not only do these negatively affect the mental health of those living with it, but research shows that it can even hinder individuals from seeking the care they need to stay physically healthy.

It’s time to change the conversation around diabetes in Canada — and eliminate the stigma once and for all.

Diabetes is one of the most common chronic conditions in Canada. Every three minutes a person in Canada is diagnosed with diabetes, yet there is still so much misunderstanding about what diabetes is and how one develops it, not to mention the negative stereotypes about those who have it.

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Those living with diabetes have heard it all: they’re lazy, they lack self-control, or they deliberately do not look after themselves. Not surprisingly then, people with diabetes are left feeling blamed and ashamed — that this life-changing diagnosis is all their fault.

I know how that feels. Literally.

When I was told that I had diabetes, I felt a wave of immense shame and immediately concluded that I had clearly, somehow, brought it on myself. Not only did I want to keep it secret from others, but I also needed to, so I could “take care of it myself.”

I found out much later that this is a common experience among people with diabetes. I also came to learn that, at that moment of diagnosis, my health-care provider could have altered the course of my diabetes journey with four simple words: “It’s not your fault.”

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A key step we have taken at Diabetes Canada to change the conversation is to field groundbreaking research to reveal how pervasive diabetes stigma is here and what the social experiences of living with diabetes looks and feels like for the more than four million of us living with it.

We are asking thousands of Canadians with diabetes about their experiences. We want to learn how those experiences may be affecting their physical health as well as their emotional wellbeing.

Diabetes is a complex condition — with several types, including type 1, type 2 and gestational diabetes, and with many risk factors which are outside a person’s control, including genes, family history and environment.

Yet, people with diabetes are often subject to negative and judgmental comments and reactions from family, friends, co-workers and others about how they should manage their weight, what activities they should do and what foods they should and should not eat.

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They also face prejudice and discrimination at work — being denied meal breaks or the ability to check their blood glucose levels, being overlooked for promotions, or even losing out on jobs because they have diabetes if employers worry that the benefits may cost too much, or that the job may be too taxing for them.

Worse still, they can face prejudice in public or in health-care settings when their self-care practices, like checking blood glucose levels or injecting insulin for a health emergency due to low blood glucose is mistaken for illicit drug use or being intoxicated.

This can all take a damaging psychological toll. Research shows that people with diabetes are at risk of low self-esteem, anxiety and depression. This is often called diabetes distress.

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So, how do we change the conversation around diabetes?

We need broad education across our society to dispel the misconceptions — what I sometimes called the triple threat of diabetes beliefs — misinformation, apathy and stigma. And we need more targeted education too — in workplaces and health-care settings to ensure they are more supportive of people living with diabetes.

We also need to consider our language and image choices when we talk about diabetes, moving from “If only you could …” to “How might I support you.”

Perhaps most importantly, we must start having a more open dialogue about diabetes in Canada, so that those of us living with it are more comfortable talking about it.

It’s time to eliminate the stigma around diabetes so that the millions of us living with it get to enjoy full and healthy lives.

Laura Syron is president and CEO of Diabetes Canada.

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