Insulin Stigma in the Type 2 Diabetes Community
“If I start insulin, it means I’ve failed at managing my diabetes.”
How many times have you heard that from in the type 2 diabetes (T2D) community? How many times have you heard a health care professional or a loved one express a similar sentiment? How many times have you said that or thought it, yourself?
Unfortunately, it’s a common belief that needing insulin to manage type 2 diabetes means one isn’t doing everything they can to manage it. But that just isn’t true. Type 2 diabetes is a progressive chronic illness, meaning that over time, one may need medications to manage it effectively and maintain a high quality of life—and that includes insulin. Even though it’s not any patient’s fault that they may need insulin, it’s still stigmatized in the type 2 diabetes community.
Why is insulin stigmatized in the T2D community?
“If you don’t follow my instructions and get your blood sugar under control, you’ll need to go on insulin.”
Many in the type 2 diabetes community have heard those words, or similar, from their health care provider. It can be used as a fear tactic to scare patients into making lifestyle changes to reach their blood glucose targets or other health goals.
However, diabetes self-management consists of an array of factors that go beyond exercise and diet. Diabetes care involves stress management, socioeconomic barriers, including access to food and healthcare, cultural norms and tradition and even discrimination. All of these factors can impact optimal diabetes self-care. Also, as mentioned earlier, T2D is a progressive disease and one may eventually require insulin.
Still, patients are reluctant to start insulin therapy and some health care providers also have a negative perception of it, too. In one study, people with diabetes who are on insulin were more likely to feel stigmatized compared to those who weren’t. Reasons for these attitudes include:
- Self-blame, meaning patients feel starting insulin therapy means they’ve failed at managing diabetes. Some providers may believe by starting their patients on insulin, they’ve failed to manage their patient’s diabetes with oral medication and now have to add a regimen that may be burdensome.
- Taking insulin means that they’ve reached the last resort to effectively caring for themselves.
- Believing insulin means they’ll need to lead a more restricted life.
- Fear of hypoglycemia
Why talking about type 2 diabetes stigma matters
Stigmas surrounding type 2 diabetes can have a significant impact on diabetes self-care. Instead of diabetes being seen as a part of one’s life, T2D stigma is characterized as a personal flaw or failure to care for one’s health. When these attitudes are internalized, it can make it difficult for people with T2D to manage it and openly sharing their stories and experiences with their illness. Stigma also manifests itself in feeling:
- Embarrassment, guilt or a burden on the healthcare system or on the family.
- Excluded from cultural or social norms such as not feeling like one can participate in the same food or celebratory traditions as people without diabetes.
- Discrimination or ridicule related to diabetes, including diabetes jokes.
- The need to “hide” one’s diabetes care, including needing to inject insulin, test blood glucose or take other medications in private.
- Experiencing blame related to diabetes such as remarks about eating too many carbs and sugar, negative weight-related comments, or remarks about being “lazy.”
- Being compared to people with type 1 diabetes such as being asked if they have the “bad” type of diabetes or if type 1 diabetes is the kind of diabetes “you didn’t cause yourself,” which implies people with type 2 caused their own illness.
- Assuming having type 2 diabetes will automatically lead to complications, including amputation or blindness.
Addressing these attitudes towards type 2 diabetes in and outside of healthcare settings is essential to improving psychological distress and decreasing barriers to self-care, especially when disclosing challenges with management.
How to change the perception of insulin usage in type 2 diabetes management
The majority of diabetes cases consist of people with type 2 diabetes. About 11% of Canadian adults aged 20+—or 1 in 9—live with diagnosed diabetes, and 90% of Canadians with diabetes have type 2. Globally, 463 million adults are living with diabetes, in general. This means chances are, you’re probably interacting with someone who’s impacted by diabetes. Whether you’re a member of the diabetes community, especially the diabetes online community, a healthcare professional, a loved one, or someone who may not even have a personal connection to diabetes, it’s up to everyone to change the perception of type 2 diabetes.
Changing this perception means:
- Educate yourself on type 2 diabetes and how people are living healthy, quality lives with it. Learn about the benefits of using insulin to manage T2D.
- Refraining from making jokes about type 2 diabetes. Kindly correct people who make them in online spaces and offline spaces.
- Having open discussions about managing type 2 diabetes, especially using insulin. Check out these stories from members of the Beyond Type 2 community about getting rid of the shame of using insulin and trusting yourself with insulin.
- Refraining from asking people with type 2 diabetes the question: Can you eat that?
- Remembering everyone’s journey with type 2 diabetes is different. For example, if you’re able to get off insulin, remember there are others with T2D who may always require it—and that’s okay. Plenty of people with type 2 diabetes who require insulin have found success managing it.
- Stop threatening patients that they’ll go on insulin if they don’t “do what they’re supposed to.” Instead, explain why insulin is a helpful tool to reaching glycemic goals and targets and identify why your patient may be resistant to it.
This content was made possible by Lilly Diabetes, a Founding Partner of Beyond Type 2.