If you’ve been diagnosed with diabetes, you probably feel a variety of emotions around living with this disease. From anxiety to disappointment to overwhelm, it’s normal to respond with different feelings.
Perhaps one of the strongest emotions around a diabetes diagnosis is shame. This reflects internal stigma—the belief you have about yourself, which, in addition to shame, can include emotions like guilt and self-blame.
Diabetes stigma is also external, and is the judgment and blame from other people and society in general.
I have lived with type 1 diabetes for 19 years and have experienced stigma plenty of times. Shortly after my diagnosis, a couple of kids at school told me they would never develop diabetes because they’re athletes. Throughout the years, I have also been asked countless times if I can eat certain foods, which reflects the ignorance in our society regarding diabetes.
Besides being irritating, stigma can lead to negative outcomes like poor diabetes management and isolation. Fortunately, stigma can be reduced.
Continue reading to explore the sources and impact of stigma, as well as how it can be addressed and decreased.
What is diabetes stigma, and where does it come from?
The negative attitudes, discrimination, or prejudice against people with diabetes that make up diabetes stigma come from the incorrect belief that diabetes is caused by unhealthy food and lifestyle choices. This viewpoint ignores the other factors that play into the development of the disease, from family medical history to where people live to how old they are.
Experiencing stigma while living with diabetes is, unfortunately, extremely common. In a study done by the American Diabetes Association, where 12,000 people with either type 1 or type 2 completed a survey, 76% of people with type 1 and 52% of respondents with type 2 reported that stigma is associated with diabetes.
Stigma is also present in the healthcare setting, and can show up when patients feel judged for their HbA1c, lifestyle, weight or time in range. It’s also present when healthcare providers make assumptions about their patients’ experiences or use fear-based messaging as a way to promote improved habits.
Media and pop culture are sources of stigma as well, with jokes and negative comments included in tv shows and social media. Even the language used around diabetes perpetuates stigma, such as when the word “diabetic” is used instead of “person with diabetes.”
The impacts of diabetes stigma
The effects of stigma are far-reaching and impact many areas of life. Psychologically, increased symptoms of depression, anxiety, and diabetes distress can occur. Some people also experience decreased quality of life and lower self-esteem.
Isolating yourself from others, hiding your diabetes, or experiencing worse relationships with friends, family, or healthcare providers are examples of how diabetes stigma influences social well-being.
Physical well-being and self-care are also impacted. Skipping appointments, avoiding proper diabetes treatment by not taking insulin or checking your blood sugar, or subsequently experiencing diabetes ketoacidosis (DKA), hospitalizations, and complications like retinopathy are just a few of the possible ways this aspect of your life can be affected.
How to reduce stigma
Luckily, there are ways to decrease diabetes stigma.
Three areas of focus for stigma reduction are structural, interpersonal, and intrapersonal. Structural stigma involves creating laws and policies to decrease discrimination, guiding the media with clear instructions on how to portray diabetes, and teaching people who have positions of power about stigma reduction.
Creating campaigns is a way to address interpersonal stigma. Developing programs and resources that focus on isolation and shame targets intrapersonal stigma.
As someone living with diabetes, you can also help fight stigma by educating people if they are open to learning, using correct language, and withholding judgment from yourself and others.
There have been campaigns created in recent years to support people with diabetes and decrease stigma, such as dStigmatize, End Diabetes Stigma and Abbott’s Above the Bias film.
In conclusion
Living with diabetes is difficult, and experiencing stigma adds another challenge. While systemic change requires a lot of time and many people working together, taking small steps to end stigma will benefit you and the rest of the diabetes community.
Consider joining advocacy groups and challenging your own beliefs and habits if you notice judgment creeping in. No step is too small to fight stigma!
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