My type 1 diabetes and I: what is my diabetic identity?

Note: In this article, the term “diabetic” is used deliberately rather than “people living type 1 diabetes.” This article reflects on the use of this term not as a negative label, but as an integral part of one’s identity.

Living with type 1 diabetes (T1D) involves more than monitoring blood sugar levels and administering insulin. It’s an experience that profoundly influences the way individuals perceive themselves and are perceived by others—a.k.a. the diabetic identity.

This notion is at the heart of a Master’s thesis in sociology written by Laurence Secours, a former patient partner of the BETTER project. In this paper, she explores how people with diabetes construct their identity and their relationship with disability. 

It presents diabetic identity not only as something that each person experiences differently, but also as something to reflect on in terms of how aspects of our society such as medicine, politics, or the media influence the way we understand it and affect the way disability is experienced and perceived.

T1D: Chronic disease or disability?

Is T1D a handicap? Depending on the person and the context, the answer may vary. In Canada, for example, type 1 diabetes is officially recognized as a handicap. Diabetics are eligible to receive the Disability Tax Credit (DTC) without having to provide justification. Yet, many diabetics prefer not to use that term. They prefer defining themselves as living with a chronic illness, emphasizing their ability to cope with daily challenges and rejecting the idea of being perceived as limited or dependent.

Disability is often seen as a limitation, or something that can easily be seen or identified, such as a missing ability or a physical obstacle. But if we were to change the way we think about disability, how would that affect diabetic identity?

Laurence considered this question while exploring how people with diabetes perceive this identity and how it impacts their relationship with diabetes.

Laurence’s thesis suggests looking at diabetes beyond medical treatments and focusing on people’s shared experiences, such as social and emotional challenges, rather than just the medical aspect.

The impact of stigmatization 

Clichés and clumsy remarks are commonplace with diabetes. Have people ever asked if you have diabetes “because you’ve had too much sugar”? These stereotypes are not only frustrating; they also influence the way people perceive and present themselves.

Although experienced differently by each person, the stigma associated with type 1 diabetes is very real. While some people tend to hide their condition or avoid talking about it, creating a sense of isolation, others choose to talk openly about it, turning their experience into a source of pride and an opportunity to raise awareness. These choices influence not only how diabetes is perceived, but also the way it is experienced on a daily basis.

Some people with T1D feel the need to emphasize that they’re not responsible for having this condition by distinguishing type 1 from type 2 diabetes, which is often wrongly perceived as solely caused by “poor lifestyle choices”.

However, this can have negative consequences. Emphasizing the differences between types of diabetes can encourage judgments and divisions and complicate diabetic solidarity. Wouldn’t it be more helpful to focus on what both types have in common and to promote mutual support in the face of common challenges related to managing diabetes, whatever the type?

How about coining a term?

To conclude, Laurence raises an interesting question: what if there was a word to describe the social issues surrounding diabetes and the various forms of stigmatization? She suggests terms like “diabetism” or “diabetility” to describe these experiences. It’s only an idea, but these words could help us understand that some comments, which we sometimes think are harmless, are in fact harmful.

Naming these experiences can help us better understand them together, and perhaps even create solidarity with other social movements. Indeed, without a precise term, it’s often more difficult to be heard and to change things.

What do you think? Would a new term be helpful in understanding this reality, or is it better to let everyone tell their story in their own way, without adding new concepts?

Laurence’s project invites everyone to reflect on their perception of diabetes and how we can create a more respectful and understanding environment for people with diabetes.