The Cambridge dictionary defines stigma as:
“A strong feeling of disapproval that most people in a society have about something, especially when this is unfair.”
As you can see from the words and phrases that are bolded above, which were not added by me but included in the online definition, key to the definition of stigma are the words strong, unfair and disapproval.
What is diabetes stigma?
Stigma arises out of the attitudes, beliefs and assumptions made about those with diabetes by people without diabetes that are part of societal norms. Stigma arises from the biases that people have toward diabetes. Such biases are sometimes explicit, as in the title above, where the person assumes that the person with diabetes is doing something wrong. However, bias and stigma are powerfully influenced by implicit assumptions that are also wrong.
Let’s consider how such implicit bias can arise. Diseases, by definition, refer to abnormal health conditions. Several reactions commonly follow a situation in which a “normal” person (a person with no disease) encounters an “abnormal” person (a person with diabetes). Human nature is to distance oneself from those who do not fit in. So, a parent whose adult child falls in love with a person with diabetes might react negatively, by saying (or thinking) something along the lines of, “Are you sure this is the right person for you? What if your children have diabetes?”
Misconceptions and stereotypes
Another source of bias is the lack of accurate knowledge in the public domain about diabetes. Many people think that people with diabetes are less capable. For instance, it is only very recently (and still not universal) that those with type 1 diabetes are permitted to become airline pilots.
Inaccurate information is often perpetuated by the media. The most common portrayal of diabetes in television shows or movies is the person who has hypoglycemia and collapses into unconsciousness. What happens then? Someone ‘rescues’ the person by injecting them with insulin, the very thing that might in fact kill them! It would be easy to educate the producers of these shows to replace the rescue treatment with glucagon, explaining that the coma is because of low blood sugar and glucagon raises it to a safe range. Why hasn’t this happened? Stigma!
Another issue relates to the fact that it is human nature for one person to try to support another by making recommendations based on what works for them or what they believe. Those without diabetes, most of whom know very little about the condition (for example, the differences between type 1, type 2 and gestational diabetes, its causes (insulin resistance, insulin insufficiency, insulin absence associated with an autoimmune response, adiposity, aging, etc.), make comments based on what they think they know.
If you live with diabetes, you have spent countless hours trying to figure out how to fit its management into your life. It is not helpful when someone suggests something obvious (“You need to watch the sugar content of what you eat.”) or something incorrect (“I’m so glad you came to dinner; we’re having pasta with cream sauce, so I boiled a chicken breast for you.”).
Fear of being judged
The day-to-day activities of managing diabetes involve behaviours that those without diabetes do not have to do. Monitoring glucose levels requires either using a lancet to draw blood to measure glucose or wearing a continuous glucose monitoring device. Acting on the results of glucose monitoring also causes a person with diabetes to stand out. As a result, many people with diabetes are not comfortable managing their disease in the presence of others.
Common reports include people avoiding self-managing their diabetes during a business meeting. Imagine feeling that your glucose levels are going low during an important meeting: Do you check your glucose levels and act on the results in front of others? Do you excuse yourself from the meeting? Or do you ignore your diabetes and wait until the meeting is over? The more a person worries that they will be judged by others, the less likely they will be to manage their diabetes in their presence. Some people have told me that they go to the bathroom to inject insulin, in the process feeling like a drug addict and worrying that someone might see what they are doing and judge them.
Assessing stigma
Recently a scale to assess the experience of stigma was developed for those living with diabetes. This scale is called the Diabetes Stigma Assessment Scale (there are separate scales for type 1 and type 2). The scale assesses the extent to which the person has been treated differently, as well as the extent to which the person experiences shame and judgment from others. Using this scale in international surveys tells us that the experience of stigma is very common.
Diabetes professionals have begun to pay attention to the issue of stigma in diabetes. In fact, an international effort to recognize and act on stigma was initiated in 2023. The international consensus recommendations to bring an end to diabetes stigma and discrimination were developed by a group of 51 experts from 18 countries. They developed, refined and endorsed the Pledge to End Diabetes Stigma unanimously. You can learn more by visiting the End Diabetes Stigma and Discrimination website.
I hope I have convinced you that stigma has a major negative psychological impact on a substantial number of people living with diabetes. What can be done about this? I hope you can contribute to reduced stigma by passing on the message about person first language (a person is not their disease), by signing and encouraging others to sign the pledge, and by educating others about common misunderstandings regarding diabetes its management.
The need for education and awareness
I would like to make one final comment about stigma. There are situations where those without diabetes contribute to stigma unwittingly, even though their intent is to help. This is why I titled this article “Should you be eating that?” The person asking this question might be intending to help. This is called miscarried helping.
If you find yourself in such a situation, consider educating the person. You might suggest that if the person wants to be supportive, a more helpful question would be, “How can I support you?” rather than making a suggestion without understanding the full picture.
