The many faces of stigmatization for children and youth living with type 1 diabetes

From the moment he was diagnosed with type 1 diabetes (T1D) at the age of 6, Vincent was no longer invited to his friends’ birthday parties. But, there were plenty of invitations before. Later, Vincent’s mom understood what had happened: Vincent’s friends thought he couldn’t be away from his parents for more than an hour because he had to have his blood sugar monitored and take insulin injections. 

Through discussions with other parents and school staff, she realized that T1D was a condition that was badly misunderstood and associated with a lot of prejudice. For example, some people believe that T1D is the result of poor lifestyle habits or excessive sugar consumption, or that children living with T1D can’t eat birthday cake or candy.

There are a lot of myths circulating in the public sphere or conveyed by the media or in TV shows or films. They can be heard everywhere, in discussions, helping to create and maintain an environment that can be hostile, even stigmatizing, for young people living with T1D and their parents.

The majority of youth living with T1D feel judged 

According to a Canadian study, around two thirds of teens and young adults with T1D, mostly female, report experiencing stigma. 

Data from 641 participants in the BETTER registry shows that feelings of stigmatization are particularly high among people aged 14 to 24. 

• 90% of 14–18 year-olds feel judged when they eat sweet foods or drinks. In people aged 18 and over, the proportion is 80%.
• 81% of teenagers (aged 14 to 18) and 83% of young adults (aged 19 to 24) receive comments on what they can or can’t do because of diabetes.       
• 81% of teenagers (aged 14 to 18) feel like they are seen as irresponsible if their blood sugar levels are not within target. 
• Blame and judgment are the two forms of stigmatization most experienced by 14–24 year-olds.

Recognizing stigma among children and youth

Stigmatization can take many forms: exclusion, rejection, discrimination, blame, prejudice, judgment. It can come from many people, including friends, teachers, the healthcare team, employers or family members.

According to testimonies gathered as part of a Canadian study on stigma and T1D, children and youth encounter a great deal of prejudice based on the frequent confusion between T1D and T2D. Others feel judged by their doctors or loved ones when they’re not satisfied with their glycated hemoglobin results.

Children and youth also report experiencing stigmatization at school. For example, in grade 6, Vincent was once told that if he didn’t manage his blood sugar better (i.e., avoid hypoglycemia), he wouldn’t be able to go with his class on the next field trip. Many also have to deal with teachers who complain about CGM or insulin pump alarms. Others have said they didn’t receive candy as a reward like the other students, because sugar is “the enemy of diabetes”. Finally, children with T1D are often required to have a parent with them to take part in a school outing.

Stigma stands in the way of diabetes management

Stigma, whether it affects parents or young people, can truly hinder diabetes management. Australian researchers have reported that feelings of discrimination can cause or increase the embarrassment some children and youth feel about their condition—they’re embarrassed about being different, having to wear devices, having alarms ringing. Some may choose not to monitor their blood sugar levels in class or at work, for example.

Canadian researchers also found that children and youth who felt stigmatized were more likely to have their glycated hemoglobin above 9 and to have experienced severe hypoglycemia in the past year.

Parents are also targeted

Stigmatization also affect the parents. They have to deal with many judgments, prejudice and false beliefs. Here are a few examples of comments that parents who have a child or teen with T1D often hear:

• “He must have eaten too much sugar as a child.” 
• “You must have taken medication during your pregnancy.” 
• “Does your child really need this much insulin? I’ve read that there are other ways to treat diabetes.” 
• “No, the bus driver doesn’t need training. If your child has low blood sugar, he’ll call the ambulance! Or, you could train another student to manage your child’s diabetes in the school bus.” 
• “Oh sorry, but your child can’t go to camp. If he has low blood sugar before or while swimming or playing sports, the rest of the group will be held up.” 
• “I haven’t planned dessert for your child, since he has diabetes.” 
• “It’s too bad for you and your child that he has diabetes. But it will go away when he grows up, right?” 

Protecting yourself from stigmatization

The mother of a child with T1D recently shared how frustrated and hurt she felt by the stigmatizing comments she and her child received shortly after diagnosis. Over time, she has gotten used to these types of comments and she no longer takes them personally; she even ignores them. She tries to answer questions and correct facts whenever she can by giving clear and concrete explanations about T1D. 

Whether you’re a young person living with T1D or a parent, you can protect yourself from stigma and reduce it. Here are some ways to do that:

• Remember that diabetes doesn’t define you or your child.
• Take care of your mental health: don’t hesitate to consult with mental health professionals who specialize in T1D.
• Don’t hesitate to explain T1D to those around you to reduce misunderstanding and prejudice: you can even give short presentations or workshops at your school or workplace.
• Talk to others in the same situation: there are many support groups for young people and parents.

Data regarding stigma demonstrates how important it is to talk more about type 1 diabetes and support young people and their families. 

You can fight stigma with education and awareness! In addition to the information (statistics, blog posts, tools) available on our site, some of the data collected by the BETTER Registry helps to shed light on stigma while raising awareness about life with T1D in Canada. Are you signed up for the BETTER registry yet?

References :

• Browne, Jessica L., et al. (2014). I’m not a druggie, I’m just a diabetic: a qualitative study of stigma from the perspective of adults with type 1 diabetes. BMJ Open 4(7). https://pubmed.ncbi.nlm.nih.gov/25056982/
• FRDJ Canada. Parlons DT1: le stigma et le DT1. Webinar broadcasted on February 23rd, 2023. [In French] https://www.youtube.com/watch?v=13YG6wzjqDw
• Brazeau, A.-S. (2018). Stigma and Its Association With Glycemic Control and Hypoglycemia in Adolescents and Young Adults With Type 1 Diabetes: Cross-Sectional Study. J Med Internet Res 20(4), e151. doi: 10.2196/jmir.9432