New research shows that, although people with type 1 diabetes are stigmatized less in Denmark than in other countries, it still happens. This may have clinical implications for those who experience it.
In some countries, such as countries in North Africa, being diagnosed with type 1 diabetes is associated with severe social stigma. For example, if a young woman has type 1 diabetes, she may not be able to get a job or get married, which are of great importance in some cultures.
Fortunately, this is not the case in Denmark, but people with type 1 diabetes continue to be stigmatized by their surroundings in various ways.
This is the conclusion of a new survey in which 78% of the respondents reported that they had experienced some type of diabetes stigma.
The research also shows that people experience very different levels of stigma and that people with severe diabetes-related emotional distress – being negatively emotionally affected in their daily lives because of diabetes – feel very burdened by being stigmatized by their surroundings.
“The most important conclusion is that we may think that people with type 1 diabetes in Denmark are not being stigmatized, but they clearly are since 78% of the respondents to our survey reported experiencing diabetes stigma. This indicates that there should probably be greater focus on increasing general knowledge of what having type 1 diabetes means, for example with colleagues and supervisors at work but also in social circles,” explains one author, Ingrid Willaing, Head, Diabetes Management Research, Steno Diabetes Center Copenhagen.
The research has been published in the Scandinavian Journal of Public Health.
Different types of type 1 diabetes stigma
The stigma people with type 1 diabetes can experience in Denmark varies greatly.
Overall, Ingrid Willaing divides diabetes stigma into three categories:
• the feeling of being considered a less valuable person because of type 1 diabetes;
• the feeling of being judged because of diabetes and the health behaviour a person exhibits; and
• the feeling of being treated differently than other people because of diabetes.
The three categories cover different scenarios in which people with type 1 diabetes may feel stigmatized.
One thing they may experience is not being invited to social events because people assume that they cannot participate in the same way as other people without diabetes.
They may feel that they get excluded in their work and career because of diabetes or that people dissociate themselves from them when they take their insulin or measure their blood glucose.
They may also feel that other people single them out if, for example, they eat a piece of cake.
“Basically, much of the stigma probably arises because people do not understand what type 1 diabetes is or mistakenly think that it is type 2 diabetes. Negative or questioning comments about a person with type 1 diabetes eating a piece of cake are totally unreasonable and rude and assume that someone who does not have diabetes knows more about how to cope with diabetes than someone who has lived with the disease for years,” explains Ingrid Willaing.
Three quarters of Danes with type 1 diabetes feel they are treated differently
In the new study, Ingrid Willaing and colleagues set out to study the extent to which people with type 1 diabetes in Denmark feel stigmatized by their surroundings.
The participants were 1,594 Danes with type 1 diabetes.
The survey is based on the Danish version of an Australian questionnaire that is used internationally, and this enables the results to be compared across borders.
The results of the study show the following.
• 4% of the respondents said they occasionally feel excluded because of their diabetes. This may include not being invited to social events.
• 78% of the respondents experienced being treated differently because of diabetes.
• More women than men feel stigmatized.
• More younger people than older people feel stigmatized. According to Ingrid Willaing, this may be because young people focus intensely on being a perfect version of themselves, and a diagnosis of type 1 diabetes can disrupt that image. This trend in Denmark differs from studies in other countries, which have shown that more older people experience stigma or there is no difference between the age groups.
• The survey found no association between educational level and feeling stigmatized.
• Fewer people who have been living with type 1 diabetes for a long time feel stigmatized than people diagnosed recently.
• Having at least one complication associated with diabetes, such as impaired vision, poor kidney function or cardiovascular disease, increased the likelihood of experiencing stigma.
• The more diabetes distress people have, the higher the risk of feeling stigmatized.
• Stigmatization is associated with poor control of blood glucose. This can cut both ways.
• Stigmatization can lead to higher blood glucose, or high blood glucose can lead to more frequent experiences of stigma.
• Severe diabetes distress is more strongly associated with experiencing stigmatization than poor control of blood glucose.
“We know that diabetes distress is associated with poor control of blood glucose and poorer quality of life and that stigma may play a role in this. Of course, we cannot say whether stigma causes diabetes distress or vice versa, but they probably interact, which is important to bear in mind,” says Ingrid Willaing.
Society needs more knowledge on type 1 diabetes
Based on the research results, Ingrid Willaing indicates that society needs to address some very tangible areas to reduce stigma among people with type 1 diabetes.
First, people must be made more aware of diabetes so that they do not inappropriately stigmatize people with type 1 diabetes. Quite simply, many people with type 1 diabetes do not like being referred to as “patients”, and people should become conscious of the language they use when communicating with people with diabetes.
Another area may be related to the workplace, where attention may need to be drawn to the few additional needs people with type 1 diabetes may have while working.
Some may need to eat at fixed times to avoid excessive fluctuation in blood glucose; others may need occasional short breaks in which they just sit down for a moment and eat a piece of fruit to prevent their blood glucose from becoming too low.
In these cases, people in the immediate surroundings should understand what is required and not comment negatively, since this may be experienced as stigmatizing.
A third area is providing better information on the differences between type 1 and type 2 diabetes.
“People with type 1 diabetes often have really good control of their diabetes and perceive type 1 diabetes as a completely different disease and situation than type 2 diabetes. People with type 1 diabetes therefore do not want to be perceived as having type 2 diabetes. The more you know about what living with type 1 diabetes is like, the less likely you are to say or do anything that can be experienced as stigmatizing. People with type 1 diabetes already have a considerable diabetes-related emotional burden, and it is unreasonable to expose them to further emotional problems because of ignorance or thoughtlessness,” explains Ingrid Willaing.
Learn to either react assertively or not react
Ingrid Willaing also says that there should be a parallel focus on the fact that people with type 1 diabetes can sometimes benefit from strengthening their own mental preparedness so that they know how to react optimally if they feel stigmatized.
Some may want to have very specific answers ready, whereas others may be able to simply shrug it off and ignore the stigma.
“Naturally, individuals differ. Some may want to react assertively to the person they feel is stigmatizing them, whereas others will not react,” says Ingrid Willaing.
“Diabetes stigma and its association with diabetes outcomes: a cross-sectional study of adults with type 1 diabetes” has been published in the Scandinavian Journal of Public Health. The authors are employed at Steno Diabetes Center Copenhagen, which has received grants from the Novo Nordisk Foundation.