We have compiled the resource library to connect you with information, organizations, and tools that can help you understand diabetes stigma and join in the growing movement to eliminate shame and blame.
Language
Words do more than reflect reality – they create reality
Join the growing movement to change the conversation about diabetes
People with diabetes, their families, and people at risk of diabetes, deserve communications that are clear and accurate, respectful, inclusive, and free from judgment and bias.
We can choose to have a culture in which people feel valued, understood, and supported — or one in which people feel misunderstood, undermined, stigmatized, and excluded.
Research
Concern about diabetes stigma is rooted in science and our expanding knowledge of its potentially harmful effects on health
Researchers have begun to sketch the outlines of diabetes stigma but more studies are needed to fully document the scope and breadth of the problem in the US. Here are key research findings and a proposed path for future research. Click the plus sign next to each study to learn more.
FOUNDATIONAL STUDIES ON DIABETES STIGMA
Takeaways: Social stigma is a concern for people with diabetes and is experienced in many domains of their life. A new framework can help people better understand diabetes stigma in terms of:
- Causes: attitudes of blame, feelings of fear and disgust, a felt need to enforce social norms and avoid disease
- Experiences: being judged, rejected, and discriminated against
- Consequences: distress, poor psychological well-being, sub-optimal self-care
Strategies to address stigma include education, protest, counseling, and social support.
Access article here.
Takeaways: Interviews with people with type 2 diabetes showed that they believe their condition is stigmatized and many have experienced stigma directly. These interviews highlighted themes related to:
- Experiences: blame, negative stereotyping, and discrimination
- Sources: media, healthcare professionals, friends, family, and colleagues
- Consequences: hiding their diagnosis and psychological stress
The researchers believe more studies should be conducted to identify ways to measure and address stigma.
Access article here.
Takeaways: Weight stigma (internal and external), as well as diabetes self-stigma, can lead to a number of concerning outcomes including:
- Higher diabetes distress
- Less diabetes self management
- Lower self-efficacy
- Lower quality interactions with healthcare professionals
Access article here.
Takeaways: Language affects people’s perceptions of and behaviors toward people with diabetes. Experts recommend using language that is:
- Neutral, non-judgmental, and based on facts, actions, or physiology/biology
- Free from stigma
- Strengths-based, respectful, inclusive, and hopeful
- Fosters collaboration between patients and providers
- Person-centered
Access article here.
Takeaways: Interviews with people with type 1 diabetes showed that they believe their condition is stigmatized and that this may result from their association with people with type 2 diabetes. These interviews highlighted themes related to:
- How stigma is characterized: blame, negative social judgment, exclusion, and discrimination
- Sources: media, healthcare professionals, friends, family, and school teachers
- Consequences: impacts relationships, social identity, self-management of their diabetes, and emotional well-being, and leads people to hide their diagnosis
The researchers believe more studies should be conducted to identify ways to address stigma. They also acknowledge that adults with type 1 sometimes cause stigma for people with type 2 diabetes.
Access article here.
Takeaways: The way people communicate can influence, persuade, and affect the way people view the world, and the current language used for and about diabetes has serious problems. Experts recommend:
- Make small changes: it’s easy and makes a big difference
- Change the conversation by starting with the language you use, calling out harmful language in others, and remembering that words have power
- Choose words that:
- show CARE (curious, accurate, respectful, and empathetic)
- remove BIAS (blame, irreverence, authority, stigma)
- Focus on more than just words: body language, tone, and attitude
Access article here.
Takeaways: This scoping review of the literature showed that women with gestational diabetes report stigma (both externally as overt discrimination or internally as guilt and blame), which may affect both their mental and physical health. Trends in the data highlight that when women with gestational diabetes do experience stigma, it can lead to:
- Avoiding screening
- Not following dietary recommendations
- Not reporting blood glucose readings
- Social isolation
- Poor mental well-being
Access article here.
Foundational studies on weight stigma
Takeaways: A systematic review resulted in 33 studies highlighting that weight stigma was associated with negative physiological and psychological outcomes, including, but not limited to:
- Obesity
- Diabetes risk
- Eating disturbances
- Depression
- Anxiety
Access article here.
Takeaways: This systematic review expands upon previous findings of weight bias in major domains of living, documents new areas where weight bias has been studied, and highlights ongoing research questions that need to be addressed to advance this field of study.
Access article here.
Takeaways: A meta-analysis of 54 studies including over 40,000 participants from 11 countries showed that weight stigma is positively related to unhealthy behaviors and negatively related to healthy behaviors. This was consistent regardless of stigma type, the focus of the health behavior, and the sample characteristics.
Access article here.
Takeaways: People with obesity experience pervasive, harmful social stigma that results in physical and psychological harm, worse health care, and discrimination in social settings. A multidisciplinary group of international experts, including representatives of scientific organizations, reviewed the available evidence on the causes and harms of weight stigma and developed a joint consensus statement with recommendations to eliminate weight bias and encourage a new public narrative about obesity that is more in line with modern scientific knowledge.
Access article here.
Studies on stigma from healthcare professionals
Takeaways: Interviews with 19 endocrinologists and primary care providers and 34 people with type 2 diabetes highlighted both of these groups views on peoples’ difficulty in achieving their diabetes treatment goals:
- Healthcare professionals assumed responsibility for their patients’ inability to reach their treatment goals, they speculated their patients may feel guilt, frustration, or disappointment as a result of not reaching goals, and they felt many people did not fully understand the consequences of diabetes.
- People with diabetes blamed themselves for not being able to carry out treatment recommendations and for their lack of progress. Some speculated their healthcare professionals might feel disappointed in or frustrated by them.
Access article here.
Takeaways: Researchers evaluated the impact of a contact-based education patient panel in an Endocrine and Metabolism course on second-year medical students’ diabetes attitudes and diabetes stigma. Though a third of the medical students showed signs of stigma toward people with diabetes prior to the panel, the one-time, contact-based intervention improved students’ attitudes toward diabetes, including an increase in empathy and a better understanding of the disease.
Access article here.
Takeaways: Weight bias from healthcare professionals can lead to lower quality of care for people with obesity and diabetes which is of particular concern given the increased emphasis on body weight and obesity in diagnosing and treating people with diabetes. This may be mitigated by interventions aimed at supporting and empowering people with obesity and diabetes such as:
- Improved training and education around the complex causes of obesity
- Encouraging the use of respectful language when discussing body weight
- Concerted challenges to negative weight-based stereotypes in the clinical settings
Access article here.
Additional research will help refine our understanding and direct efforts for change
Our research workgroup is developing an agenda for future research that will help document the extent and impact of the blame and shame that people with diabetes experience.
Topics of interest for study include:
- Observational study to assess the prevalence of diabetes stigma/self-stigma in media
- Survey (using validated measures) of people with diabetes (type 1 and type 2) to assess the mental and physical health impact of diabetes stigma/ self-stigma
- Survey of healthcare professionals to assess bias toward people with diabetes
- Survey of the general public to assess bias toward people with diabetes
- Intervention testing as informed by the three survey studies
General Diabetes Resources
Basic information about diabetes
If you are new to diabetes and want to learn more, you can familiarize yourself with the basics by visiting diaTribe Learn and the American Diabetes Association.
This free online publication provides information on diabetes management, diet, and exercise; avoiding complications; and the latest innovations in technology and therapies.
This section of the ADA website provides simple, clear, accurate information about diabetes with connections to a variety of additional resources online and in your community.
Other helpful resources include the Centers for Disease Control and Prevention (CDC), the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), Beyond Type 1, Beyond Type 2, JDRF, and the International Diabetes Federation (IDF).
Advocacy and support for people with diabetes
These organizations provide high-quality information for people with diabetes on a range of topics. Some also support research efforts, platforms for advocacy and policy change, and ways to bring people together in community.
In addition to funding research into the prevention, cure, and management of diabetes, the ADA provides objective and credible information for people with diabetes and healthcare professionals and gives a voice to those denied their rights because of diabetes.
Through platforms, programs, resources, and grants, Beyond Type 1 unites the global diabetes community and provides solutions to improve the lives of people with diabetes by focusing on education, advocacy and finding a path to a cure for Type 1 diabetes.
As a program of Beyond Type 1, Beyond Type 2 creates a space for people to share their stories, get connected to the community, and find resources on topics from daily diabetes management to mental health.
Children with Diabetes provides education, support, and inspiration to empower families living with type 1 diabetes and help them live healthy, enriched lives.
The College Diabetes Network provides young adults with type 1 diabetes the peer connections and expert resources to successfully manage the challenging transition to independence at college and beyond.
Diabetes Daily is an online resource for learning about a wide variety of topics related to diabetes; they also host a number of forums for people in the community to connect and discuss topics that interest them.
The Diabetes Leadership Council (DLC) is a patient advocacy organization comprised of experienced leaders in the diabetes community. DLC members – all former leaders of national diabetes organizations – are committed to securing effective, affordable health care and a discrimination-free environment for every person affected by diabetes through sound policy initiatives at the federal and state levels.
The Diabetes Patient Advocacy Coalition (DPAC) is a grassroots alliance of thousands of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes.
DiabetesSisters helps women of all ages with all types of diabetes live healthier, fuller lives through education and peer support services, giving women a space to freely share information, helpful tips, and stories of hope.
diaTribe helps people with diabetes live happier, healthier, and more hopeful lives through education and advocacy. The free online publication diaTribe Learn provides information on diabetes management, diet, and exercise; avoiding complications; and the latest innovations in technology and therapies.
Diversity in Diabetes creates awareness and provides solutions to end health disparities and the lack of representation in the diabetes space.
In addition to JDRF’s focus on funding research on the prevention, treatments, and cures for type 1 diabetes, it also provides educational resources for people with type 1 diabetes, connects members of the community through their local chapters, and hosts fundraising events.
My Diabetes Secret is a platform that allows people with diabetes to anonymously share their experiences, vent their frustrations without fear of judgment, share without shame, and find comfort knowing that they aren’t the only people experiencing a bad day.
Taking Control Of Your Diabetes educates and motivates people with diabetes to take a more active role in their condition and provides innovative and integrative continuing education to medical professionals caring for people with diabetes
The Australian Centre for Behavioural Research in Diabetes is the first national research center in Australia and internationally, dedicated to investigating the behavioral, psychological, and social aspects of diabetes, including diabetes stigma.
Diabetes Australia is a non-profit organization that raises awareness about diabetes, promotes prevention and early detection strategies, and advocates for better standards of care.
Diabetes Canada is a national charity that invests in diabetes research, provides support & education programs for people with diabetes & HCPs, and facilitates the development of national policies about diabetes.
Diabetes UK is a British-based charity that funds diabetes research, creates communities for people with diabetes, provides actionable information about diabetes, and campaigns for improvements in the care and treatment of people with diabetes.
Umbrella organization of over 230 national diabetes associations in 170 countries and territories; leading the global diabetes community since 1950.
