How do people living with type 1 diabetes perceive stigma?

Did you know that among people living with type 1 diabetes (T1D), those feeling distressed about diabetes or lacking support can perceive higher levels of stigma? Or that women and youth aged 14 to 24 years have an increased perception of stigma compared to men and/or older people? Those are some of the findings of a recent BETTER study which focused on identifying and understanding factors that can predict T1D-related stigma perception and its influence on different genders and age groups.

What is T1D-related stigma?

T1D-related stigma is a social phenomenon characterized by exclusion, rejection, blame or depreciation of individuals living with this condition. It arises from negative social judgments and misconceptions about T1D. 

Stigma refers to two things:

1- Experiencing discriminatory behaviors (e.g., being excluded by others from social events because of T1D), prejudice (e.g., assuming that T1D is self-inflicted), false beliefs (e.g., eating sugar causes T1D) or negative attitudes (e.g., being labelled as unreliable because of T1D) ;

2- Perceiving discriminatory behaviors or attitudes. For example, feeling embarrassed taking insulin in front of strangers due to fear of being judged. 

Stigma is typically measured as a perception – how one thinks other people view them –  rather than as an absolute presence of stigma.

The perception of stigma can, unfortunately, lead individuals living with T1D to hide their condition and avoid diabetes care to conform to societal norms. Overtime, this can make T1D management more challenging and significantly impact their health.

To develop effective strategies for reducing T1D-related stigma, a better understanding of the factors that can predict stigma perception in different age groups and genders is needed. In this respect, our researchers analyzed how 709 participants in the BETTER registry rated their agreement, on a scale from 1 to 5, with statements about stigma (e.g., “Because I have type 1 diabetes, some people judge me if I eat sugary food or drinks” and “Some people think I’m irresponsible when my diabetes management isn’t perfect”). 

Perception of stigma differs within different genders and age groups

Our study shows that women living with T1D perceive more stigma compared to men. This is linked to other research showing that women with diabetes are more likely to experience depression. Gender-based discrimination may play a role in both increased stigma and worsened mental health outcomes, making it harder for women to manage their diabetes. 

Youth aged 14 to 24 feel more stigma than other age groups. This may be due to the unique challenges they face, such as psychological and physical changes, and societal pressures. They are more likely to feel blamed or judged for their T1D, with others assuming they manage it poorly or that their diagnosis is tied to lifestyle choices (e.g., eating too much sugar, or not doing enough exercise). This perception is especially strong as they gain independence with managing their condition.

Interestingly, overall perceived T1D-related stigma decreases with age, with older adults (65 and older) reporting the lowest feelings of blame, judgment, or being treated differently. This may be because social judgments matter less as we age, and self-acceptance of diabetes grows over time. Additionally, seniors may face fewer stigma-related events at work or in social settings compared to when they were younger, which may lower their perception of stigma.

Forms of stigma perception

Stigma perception can be categorized into three forms, as reported by the BETTER registry participants. 

• Blame and judgment were the most common experiences, especially among youth. This includes being seen as not managing diabetes well, being irresponsible, or being judged for “eating too much sugar.” The belief that T1D is caused by personal choices is a common misunderstanding about diabetes and how it is managed in society.

• Identity concerns-related stigma involves fears about being mistaken for a drug user when injecting insulin, or being labelled as “sick” or “disabled.” It also includes concerns about how diabetes affects self-image and relationships. Out of the seven questions on the stigma questionnaire assessing for identity concerns, participants most often agreed with feeling embarrassed about what others might think during a public hypoglycemia episode. These concerns likely come from worries about how others see them.

• Being treated differently stigma involves feeling discriminated against, left out, or rejected in social or romantic situations because of T1D. This type of stigma was the least perceived and did not change significantly with age. It may be because people living with T1D are more aware of other types of stigma, like blame and judgment, or threats to their social identity. They may also be more resilient to this type of treatment, having developed ways to cope. Supportive social networks may help protect against this type of stigma.

Predictors of stigma perception

In our study, we found that certain feelings and behaviours were connected to higher stigma perceptions. People who experienced more stress related to their T1D, who were afraid of high or low blood sugar, felt depressed, or had less support from friends and family were more likely to feel stigmatized.

Higher stress and anxiety may make people living with T1D more sensitive to negative attitudes or ambiguous situations. For example, they might worry about how others will react if they share that they have T1D, fearing negative responses like judgment or misunderstanding. They may also feel uneasy in situations where they need to check their blood sugar or inject insulin in public, worrying about what people might think or say. Additionally, social isolation can further reinforce the feeling of being different.

Previous experiences of being stigmatized, hearing negative comments or witnessing the misrepresentation of T1D in the media might, as well, predispose people living with T1D to worry about stigma.

Finally, diabetes distress may also lower self-esteem and self-efficacy, increasing the perception of stigma through feelings of self-doubt and inadequacy, which could contribute to the perception of blame and judgment-related stigma.

What can we do about stigma?

Several factors contribute to stigma in people living with T1D. Efforts to reduce stigma must be inclusive, considering everyone’s experiences. The finding that youth and women are more affected by stigma highlights the need for interventions tailored to different age groups and genders.

This could involve education campaigns to challenge stereotypes and increased support to help manage diabetes and cope with stigma-related stress, such as fear of hypoglycemia, depression, and diabetes distress. This approach would not only benefit people with T1D but also the general population and healthcare providers by fostering understanding and empathy, ultimately creating a more supportive environment for everyone affected by T1D.

The BETTER registry helps us understand stigma and raise awareness about life with T1D in Canada. Please share this blog and other BETTER project content to help us increase the registry’s diversity and impact.

Reference:

Housni, A., et al. (2024). Predictors of Stigma Perception by People with Type 1 Diabetes: A Cross-Sectional Analysis of the BETTER Registry. Diabetes & Metabolic Syndrome: Clinical Research & Reviews, 103112. https://www.sciencedirect.com/science/article/pii/S1871402124001735?dgcid=coauthor