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.
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.”
The key findings of the survey show that people with diabetes can experience diabetes distress, stigma, 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.
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.
• 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.
• 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.
Although 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.
—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
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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Diabète Canada révèle les principales conclusions d’un sondage national inédit sur l’ampleur de la stigmatisation, des jugements et de la discrimination que subissent les personnes diabétiques et sur la manière dont cette expérience sociale mine leur qualité de vie.
Rédigé en collaboration avec Environics Research, le rapport intitulé Social Experiences of Living with Diabetes in Canada: A research report on stigma, judgement and discrimination experienced by those living with diabetes (2024) montre que le diabète touche non seulement la santé physique, mais aussi les relations interpersonnelles, le travail ou les études, les loisirs, la situation financière et le bien-être psychologique.
De fait, près de 90 % des personnes atteintes de diabète de type 1 et 70 % des personnes atteintes de diabète de type 2 se font adresser des reproches et rabaisser en raison de leur maladie.
« Étant moi-même atteinte de diabète de type 2, je sais combien la stigmatisation peut pourrir la vie des Canadiens et Canadiennes diabétiques, affirme Laura Syron, présidente et cheffe de la direction de Diabète Canada. Il faut changer le discours entourant le diabète – c’est-à-dire remettre en question les valeurs, les croyances et les messages – afin que les personnes vivant avec le diabète se sentent mieux comprises et acceptées. Ainsi, elles seront beaucoup plus enclines à aller chercher l’aide et les soins dont elles ont besoin pour être en meilleure santé et mieux profiter de la vie. »
Les principales conclusions du sondage montrent que la maladie, la stigmatisation et le manque de soutien peuvent susciter une grande souffrance psychologique chez les personnes vivant avec le diabète et ainsi compromettre leur état de santé et leur qualité de vie. Les idées fausses, les jugements et les préjugés auxquels se butent ces personnes peuvent perpétuer le cycle de l’isolement et des inégalités.
Diabète Canada invite la population à revoir les idées fausses qui entretiennent la stigmatisation du diabète et à changer le discours afin d’améliorer concrètement la vie des quelque quatre millions de personnes qui ont reçu un diagnostic de diabète au pays.
« Grâce à ces données, Diabète Canada peut comparer les expériences sociales des personnes vivant avec le diabète afin de faire évoluer le discours », explique Michael Vallis, psychologue de la santé agréé, professeur agrégé, consultant en changements comportementaux en matière de santé et expert-conseil consulté pour la rédaction du rapport. « Les personnes vivant avec le diabète méritent plus de compréhension et de compassion partout où elles se trouvent, que ce soit au travail, à l’école, dans leur famille et leur cercle amical ou même dans les établissements de soins de santé. »
Apprenez-en davantage sur diabetes.ca/changetheconversation (en anglais).
Diabète Canada tient à remercier les membres fondateurs de la Table des partenaires du projet Change the Conversation : 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.
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 diabetes distress, stigma, 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 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.
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.
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.
Although 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
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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Diabète Canada publie les résultats d’un sondage inédit sur l’expérience sociale des personnes vivant avec le diabète
Selon ce nouveau sondage, près de 90 % des personnes atteintes de diabète de type 1 et 70 % des personnes atteintes de diabète de type 2 se font adresser des reproches et rabaisser en raison de leur maladie.Diabète Canada révèle les principales conclusions d’un sondage national inédit sur l’ampleur de la stigmatisation, des jugements et de la discrimination que subissent les personnes diabétiques et sur la manière dont cette expérience sociale mine leur qualité de vie.
Rédigé en collaboration avec Environics Research, le rapport intitulé Social Experiences of Living with Diabetes in Canada: A research report on stigma, judgement and discrimination experienced by those living with diabetes (2024) montre que le diabète touche non seulement la santé physique, mais aussi les relations interpersonnelles, le travail ou les études, les loisirs, la situation financière et le bien-être psychologique.
De fait, près de 90 % des personnes atteintes de diabète de type 1 et 70 % des personnes atteintes de diabète de type 2 se font adresser des reproches et rabaisser en raison de leur maladie.
« Étant moi-même atteinte de diabète de type 2, je sais combien la stigmatisation peut pourrir la vie des Canadiens et Canadiennes diabétiques, affirme Laura Syron, présidente et cheffe de la direction de Diabète Canada. Il faut changer le discours entourant le diabète – c’est-à-dire remettre en question les valeurs, les croyances et les messages – afin que les personnes vivant avec le diabète se sentent mieux comprises et acceptées. Ainsi, elles seront beaucoup plus enclines à aller chercher l’aide et les soins dont elles ont besoin pour être en meilleure santé et mieux profiter de la vie. »
Résultats du sondage sur l’expérience sociale des personnes diabétiques au Canada
Dans le cadre de cette étude, 786 personnes atteintes de diabète de type 1 et 1 013 personnes atteintes de diabète de type 2 ont été interrogées à la fin de 2023 afin d’examiner la dynamique sociale et psychologique du diabète et son incidence sur le quotidien.Les principales conclusions du sondage montrent que la maladie, la stigmatisation et le manque de soutien peuvent susciter une grande souffrance psychologique chez les personnes vivant avec le diabète et ainsi compromettre leur état de santé et leur qualité de vie. Les idées fausses, les jugements et les préjugés auxquels se butent ces personnes peuvent perpétuer le cycle de l’isolement et des inégalités.
Diabète et souffrance psychologique
Il n’est pas rare que les personnes vivant avec le diabète éprouvent des difficultés d’ordre émotionnel et psychologique attribuables aux contraintes permanentes associées à la prise en charge de leur maladie. Elles peuvent notamment ressentir de la frustration, de l’inquiétude et de l’épuisement du fait de devoir sans cesse surveiller leur glycémie, suivre leur traitement et maintenir de bonnes habitudes de vie. Selon le rapport :- 46 % des personnes atteintes de diabète de type 1 vivent de la souffrance psychologique liée au diabète;
- 31 % des personnes atteintes de diabète de type 2 vivent de la souffrance psychologique liée au diabète.
Diabète et stigmatisation
Les principales conclusions de l’étude montrent que les personnes diabétiques sont souvent victimes de stigmatisation – qu’il s’agisse de préjugés sur ce qu’elles peuvent ou ne peuvent pas faire, de jugements auxquels elles s’exposent en consommant tel ou tel aliment ou de reproches quant au fait qu’elles sont diabétiques. Par exemple :- 54 % des personnes atteintes de diabète de type 1 ont déjà été traitées différemment à cause de leur maladie;
- 31 % des personnes atteintes de diabète de type 2 ont déjà été traitées différemment à cause de leur maladie.
Soutien
Les personnes vivant avec le diabète hésitent souvent à demander de l’aide, à exprimer leurs besoins en matière de prise en charge ou à participer à des activités visant à améliorer leurs soins. Plus concrètement :- 40 % des personnes atteintes de diabète de type 1 demandent rarement ou jamais l’aide dont elles ont besoin pour prendre en charge leur diabète;
- 56 % des personnes atteintes de diabète de type 2 demandent rarement ou jamais l’aide dont elles ont besoin pour prendre en charge leur diabète.
Diabète Canada invite la population à revoir les idées fausses qui entretiennent la stigmatisation du diabète et à changer le discours afin d’améliorer concrètement la vie des quelque quatre millions de personnes qui ont reçu un diagnostic de diabète au pays.
« Grâce à ces données, Diabète Canada peut comparer les expériences sociales des personnes vivant avec le diabète afin de faire évoluer le discours », explique Michael Vallis, psychologue de la santé agréé, professeur agrégé, consultant en changements comportementaux en matière de santé et expert-conseil consulté pour la rédaction du rapport. « Les personnes vivant avec le diabète méritent plus de compréhension et de compassion partout où elles se trouvent, que ce soit au travail, à l’école, dans leur famille et leur cercle amical ou même dans les établissements de soins de santé. »
Apprenez-en davantage sur diabetes.ca/changetheconversation (en anglais).
Diabète Canada tient à remercier les membres fondateurs de la Table des partenaires du projet Change the Conversation : 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.