Diabetes Canada releases first-of-its kind survey on the social experiences of living with diabetes

Nearly 90% of people living with type 1 diabetes and nearly 70% of people living with type 2 diabetes experience shame and blame for having diabetes, according to this new survey.


Toronto, ON, Sept. 24, 2024 (GLOBE NEWSWIRE) -- Diabetes Canada has unveiled the key findings of a first-of-its-kind national survey on how widespread stigma, judgement and discrimination is for those who live with diabetes and the impact of those social experiences on the quality of life for people with diabetes.

Social Experiences of Living with Diabetes in Canada: A research report on stigma, judgement and discrimination experienced by those living with diabetes (2024), in partnership with Environics Research, shows that diabetes can not only negatively impact a person’s physical health but can also negatively affect their personal relationships, work or studies, leisure activities, financial situation, and emotional well-being.

In fact, nearly 90% of people living with type 1 diabetes and 70% of people living with type 2 diabetes experience shame and blame for having diabetes.

“As someone who lives with type 2 diabetes, I know first-hand how stigma can negatively impact the quality of life for people living with this condition in Canada,” says Laura Syron, President & CEO of Diabetes Canada. “We need to change the conversation around diabetes—the values, beliefs and language—so that people living with this condition can feel more accepted and understood. These feelings can dramatically improve the likelihood that people living with diabetes can receive the support and care they need to better their health outcomes and their quality of life.”

Insights from the Social Experiences of Living with Diabetes in Canada survey

For this study, 786 people living with type 1 diabetes and 1,013 of people living with type 2 diabetes were asked a series of questions in late 2023 to delve into the social and psychological dynamics of diabetes as it impacts their lives.

The key findings of the survey show that people with diabetes can experience stigma, diabetes distress, and challenges with support, impacting their overall health and quality of life. The misconceptions, judgements, and biases that they encounter can perpetuate a cycle of isolation and inequality.

Diabetes stigma

In the survey, key findings show how people living with diabetes must deal with unfair assumptions about what they can and cannot do, judgements if they consume specific foods, and being blamed for having diabetes. For example:

  • 54% of people with T1D have been treated differently because of their diabetes.
  • 31% of people with T2D have been treated differently because of their diabetes.

Survey responses regarding diabetes stigma highlight how misunderstood this complex condition is by the general public.

Diabetes distress

Diabetes distress refers to the emotional and psychological challenges that people living with diabetes face due to the ongoing demands of managing their condition. This can include feelings of frustration, worry, and burnout from constantly monitoring blood sugar levels, adhering to treatment plans, and maintaining a healthy lifestyle. According to this report:

  • 46% of people with T1D experience diabetes distress.
  • 31% of people with T2D experience diabetes distress. 

Survey responses show that people living with diabetes experience a general worry about their future and the possibilities of serious complications that come along with diabetes.

Support

People living with diabetes tend to refrain from asking for support, articulating their needs when it comes to diabetes management or taking part in activities to improve their care. More precisely:

  • 40% of people with T1D never or rarely ask for support to help manage their diabetes when they need it.
  • 56% of people with T2D never or rarely ask for support to help manage their diabetes when they need it.

While support for diabetes management may be available, survey responses show that many people living with diabetes still hesitate to ask for help despite a recognized need for support. 

While survey respondents expressed mostly negative sentiments in self-describing their lived experiences, they share a desire for greater understanding and empathy from others.

Diabetes Canada is calling on Canadians to challenge the misconceptions that fuel stigma around diabetes and to help change the conversation to make a real, positive difference for the more than four million people diagnosed with diabetes in Canada.

“With these data, Diabetes Canada can benchmark the social experiences of people living with diabetes so that the conversation around diabetes can start to change,” explains Dr. Michael Vallis, Expert advisor for the Social Experiences of Living with Diabetes in Canada report, registered health psychologist, Associate Professor, and health behaviour change consultant. “People who live with diabetes deserve more understanding and empathy in all the places they find themselves—their workplace, schools, among friends and family, and even in healthcare settings.”

Find out more at diabetes.ca/changetheconversation.

Quotes

"Whether it's worrying about long-term complications, unfair assumptions about what I can and cannot do, fear of being misjudged while doing a site change, or even the scare tactics to shame me into behaving perfectly, I've experienced them all as someone living with diabetes. But I've also heard this from my community on TikTok and YouTube; that they feel scared, alone, and blamed for living with this condition." 

Mary Comeau lives with type 1 diabetes in Langford, BC

“Stigma can lead to feeling isolated, negative or believing you are fundamentally flawed. In the early years, I asked myself constantly, “Why me?” as I felt tainted, shameful and negative about my diabetes diagnosis. But living with type 1 diabetes for more than three decades has made me resilient, mentally tough, and positive. I take pride in the strength it has forged in me.”

 —Najeeb Ashraf lives with type 1 diabetes in Vaughn, ON

"In the South Asian community, even when diabetes is talked about, we don't always appreciate the serious consequences of the disease. The general conception is that South Asians love their sweets, ghee and fried street foods, hence the higher rate of the disease in the community--but the issue is not just exercise and eating right. Diabetes can be scary. We need to educate, learn better approaches and work together to confront the challenge, and win the game."

—Geetika Bhardwaj lives with type 2 diabetes in Toronto, ON

Resources

About Diabetes Canada

A world free of the effects of diabetes is our vision. That’s why we’re working together to improve the quality of life of people living with diabetes. We’re sharing knowledge and creating connections for individuals and the health-care professionals who care for them; advocating through public policy; and funding research to improve treatments and find a cure to end diabetes.

Thank you to Diabetes Canada’s Change the Conversation Partners Table Founding Members: Neil Fraser, Medical Technology Executive & Health Innovation Policy Advisor; Dr. Lorraine Lipscombe, MDCM, MSc, FRCPC, Director, Novo Nordisk Network for Healthy Populations at University of Toronto; Adele Fondeaux, General Manager General Medicine Canada, Sanofi Canada; Amir Naseri, Senior Director, Pharmacy Services Strategy & Innovation, Shoppers Drug Mart; Aliya Tharani, AVP, Healthcare Strategy, Data and Interventions, Manulife Canada; and Dr. Catharine Whiteside, Director, Strategic Partnerships, Diabetes Action Canada.

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Social Experiences of Living with Diabetes in Canada

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