Type 1 Diabetes Stigma: As a (Stigma)tter of Fact

Type 1 Diabetes Stigma: As a (Stigma)tter of Fact

Early Diagnosis and Isolation

I do not remember a life without diabetes (humble brag?). I was diagnosed at two years old and I did not meet anyone around my age with T1D until I was 18 years old. Being the first kid with T1D in my family was isolating. It was hard for my immigrant parents to learn and deal with this disease, and it was equally as hard for my older sisters who were still kids. A big shout-out goes to “The Baby-Sitters Club” books. That was the only point of reference my sisters had in November 1997.

The Harm of Blaming the Individual

Genetic, environmental, lifestyle and socioeconomic factors must be looked at when it comes to how people get diabetes. However, it is more often the case to blame the individual for “giving themselves diabetes.” Messaging like this is untrue and incredibly harmful. Blaming people for their diagnosis does nothing but worsen their diabetes management routine, mental health and self-care.

Navigating the Intersection of Culture and Diabetes

I always felt like a burden to my family for having diabetes because it caused them so much distress. It was a massive learning curve for my parents and sisters. In 2022, I decided to get my medical records from when I was diagnosed. Reading the clinicians’ notes shocked me – their words sounded so harsh. Learning about diabetes from medical professionals who we felt were neither sensitive to nor able to accommodate our cultural differences? Explaining this complex disease when English is not your first language to a toddler? How to carb count for food when ingredients are eye-balled? I cannot blame my family for being overprotective.

I always felt uncomfortable with the intersection between culture and diabetes. On one hand, I was told to be discrete about it, but my elders always felt so comfortable confronting me with their weird questions and weirder remedies. From a young age, these comments made me feel so small and cursed. I knew I was more than my diagnosis but that is all my community saw. Diabetes was this shameful secret.

Stigma can really harm your self-worth.

Shared Experiences and the Importance of Compassion

These comments are not unique to me. Many folks with diabetes experience this, and as unfortunate as it is, it’s been validating to share these moments with them and normalize our quirks (aka our day-to-day lives). Diabetes is both an invisible and visible disease. Thanks to advancements in diabetes tech, more people can “see” diabetes. The language we use will impact how we think about diabetes. More compassion and understanding are needed to help destigmatize chronic illnesses. Please keep this in mind when talking to others about chronic illnesses.

Setting Boundaries in Conversations

Truthfully, I do not mind answering people’s questions about diabetes; however, there are some exceptions. Please refrain from asking me if I got diagnosed because my parents fed me too much sugar, if my diabetes is in good control, or if I got diabetes because I was vaccinated as a kid, etc. If I can be comfortable with my diagnosis, so should you.

Finding My Voice

I have carried all of this with me for a very long time, and somewhere along the way, I have accepted my diagnosis and found my voice. Like any other chronic illness, diabetes is challenging, and it looks different for everyone! I know how to ride the waves of living with diabetes. Part of riding the wave is knowing when to walk away from conversations that will do more harm than good. Another part is knowing I am an advocate, an expert, a mentor, a patient, and so much more.