Type 1 diabetes is understood to be ‘caused’ by biological factors (like genetics) which means there is less stigma. However, type 2 diabetes is often seen as being ‘caused’ by being overweight and other lifestyle choices, which results in blame and judgemental comments – the Abbott survey found that nearly 80% of the respondents see type 2 diabetes as being ‘caused’ by lifestyle choices and weight1.
People living with type 2 diabetes are vulnerable to both weight stigma and diabetes stigma and report differential health care treatment. The impact of this stigma can result in binge eating as a coping strategy to deal with negative feelings, lower levels of physical activity and worse self-rated health2. Stigma experienced by people living with diabetes is one of the largest barriers to engagement with treatment.
Stigma is not just how the outside world views us
People living with diabetes can also develop negative attitudes towards their own condition. This self-stigma can make people feel guilty, inadequate, embarrassed, and angry. They may also have low self-esteem, doubt their own abilities and feel isolated.
These negative feelings can also impact on how people manage their diabetes. One example might be feelings of intense discomfort about injecting insulin in public. The impact of medical devices being visible can also be a significant factor for adolescents feeling ashamed or uncomfortable, believing that these visible devices will result in stigmatising behaviour from others; this can also create self-stigma.
The fact that diabetes will never go away and unpredictable events like experiencing a hypo can also impact on how people living with diabetes believe others see them and how they see themselves. Finally, how much people believe diabetes will have an impact on relationships and success is another area that can cause stigma.
Healthcare professionals can also unintentionally fall into the ‘stigma trap’
Whilst the majority of health care professionals work hard to provide the best possible care, like all of us, they can be affected by stigmatising beliefs and behaviours. This is most likely to occur when healthcare professionals feel that whatever they do, they are not helping someone manage their diabetes.
This can result in beliefs that the ‘problem’ is located within the individual rather than in the treatment system. This can be unconsciously acted out through negative stereotypes in the kind of language used when describing someone e.g. ‘non adherent, ‘failing’. Patients have also reported feeling that treatment is being withheld or removed because ‘they don’t deserve it’.
Stigma is also experienced at school, university and in the workplace
For many there is a lack of understanding of the realities of living with a demanding, unpredictable, and relentless condition reflected in the way school, college or the workplace responds to someone with diabetes.
Many adolescents and young adults will avoid telling others about their diabetes and adults may not tell their employer that they have diabetes. A failure to make adequate allowances in the school environment is not an unusual complaint in the diabetes clinic and many adults with diabetes feel discriminated against by their employer and that living with diabetes causes difficulty at work.
In the Abbott survey, nearly 62% of the general public respondents said that they wouldn’t inform work colleagues if they lived with diabetes1. There is a perception that some employers may not understand - or be willing – to allow time off work for appointments or offer flexibility with respect to breaks for measuring blood glucose, eating when required and taking medication.
We need to all work together to dispel public, private and institutional stigma
Stigma towards people living with diabetes is widespread. Diabetes doesn’t discriminate but people inadvertently do, which is why we all have a role to play to change perspectives. Here’s how we can do it:
- Talk through the impact of self-stigma and stigma from others with your diabetes team or with a psychologist or coach, to help identify and challenge negative thoughts, feelings and behaviours.
- Look for positive images on social media (@diabetic_health_coach on Instagram is a great example) and share it with others.
- Find positive educational messages that can be shared in school, at college or in the workplace.
- Join social media campaigns challenging stigma.
- Advocate for positive language on patient forums.
- Write to your MP asking for support recognising and challenging stigma and its effects.
Professor Deborah Christie received a fee to write this article. The views expressed are her own and not necessarily those of Abbott.
You can follow her on Twitter @drdebs2110.
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