Is there a stigma around living with diabetes?

Is there a stigma around living with diabetes, do you think? Many people with diabetes feel as though there’s a diabetes stigma. 

The additional stress of feeling stigmatised can affect your health, resulting in an increased risk of developing complications, or mental health problems. So what can you do about diabetes stigma? Shannon Innell unpacks the problem for us.

What is diabetes stigma?

Diabetes stigma can be present anywhere – in school, in the workplace or even at home (where it can also negatively affect family members). Examples range from discrimination to a generally negative attitude towards people struggling with the condition.

External stigma

We asked our community members on Diabetic South Africans if they felt there was a stigma attached to living with diabetes. The answer? Yes.

Diabetes stigma can be external or internal. External stigma comes from other people or society (and the media) as a whole. This can cause people with diabetes to develop feelings of fear, embarrassment, anxiety or a low self-image. If every article in the media about Type 2 diabetes is accompanied by a plate full of junk food, the message is that people gave themselves Type 2 diabetes by eating junk food. This is not true! 

“People are like that. They say they rather choose HIV than be walking dead with diabetes,” says Mmaletlotlo.

Another common example of external stigma is family members or friends making comments about your food choices or policing what you’re doing or how you’ve chosen to manage your condition. 

“I think one of my biggest frustrations and irritations around diabetes is the lack of insight or knowledge people have,” says Emma-Leigh. “The amount of times I have heard, ‘you must’ve eaten too much sugar as a child,’ or ‘Type 1, is that the bad one?’, and my best is, ‘my aunty’s friend’s sister’s cousin was diabetic and she just drinks (whatever home remedy she was told about) and she isn’t diabetic anymore.’ Really wish people would educate themselves on the diagnosis and not say or believe old wives tales.”

Internal stigma

It’s important to realise that diabetes stigma can also be internal – this means that it comes from you. For example, when you start feeling guilty about having a block of chocolate, or you start to resent having to inject yourself and you compromise your health as a result.

“Sometimes I can’t help but feel like somewhat of a burden on those around me. When highs and lows happen it affects my mood, my energy and although I know my loved ones understand, I still feel bad,” says Darren.

“People think diabetes is only for the elderly and a deadly disease,” says Sbo. “I’m not comfortable telling my colleagues that I am diabetic.”

Understand how you feel

Stigma may look, and feel, different for everyone. The most important thing is that you understand your feelings are valid. Any time you feel guilty about the way you manage your diabetes or your choices as a result of someone else, you’re probably experiencing diabetes stigma. 

“A family member told me once: ‘it’s all in your head’ after I refused to eat cake and sweet things,” shares Lisa.

“People just do not understand diabetes. They think you overdosed on sweets,” says Sannette.

Another example of stigma is parents of children with diabetes who are blamed for their child’s condition or the way they’ve chosen to manage it. In the same way, a woman who experiences gestational diabetes may be made to feel as though she’s done something to cause harm to her unborn baby. None of this is true, but that doesn’t stop it from being painful.

What causes diabetes stigma?

Diabetes is a complicated chronic illness and even those who are affected struggle to understand it. Genetics, lifestyle or even your environment can lead to diabetes. Because there are so many potential factors involved, it can make it challenging for some people to truly understand the condition. 

Another cause is the misconception that diabetes is the direct result of poor health choices, making people with this condition feel as though they’re responsible for it. Not only is this idea incorrect, but it’s harmful too. People with diabetes end up feeling judged, blamed and disrespected. 

“If you say you are diabetic, people think you eat too much sugar and that’s what caused it,” says Butterbean. “If you are Type 2, everyone rushes for the unhealthy lifestyle assumption, not knowing there are so many health conditions and medications that lead to Type 2 diabetes, and that there are also athletes and sportsmen who have type 2 diabetes. There’s a lot of judgment around it.”

This type of stigma also dilutes the relevance and importance of other contributing factors that should be taken into account. Yes, Type 2 diabetes is triggered by lifestyle choices in many cases – but that’s not the full story. Genetics play a huge part in developing Type 2 diabetes. Here are the risk factors for Type 2 diabetes, if you need a reminder. 

Stigma around weight

Probably the most common misconception about people with diabetes, specifically those with Type 2 diabetes, is around weight and obesity.  This constant judgement can cause high levels of stress, increasing the risk of developing additional health complications and even leading to a lack of self-care. 

The diabetes stigma around weight can also prevent people from speaking out about their symptoms, seeking help from healthcare professionals, or getting diagnosed. This risk is heightened when diabetes stigma comes from these healthcare professionals. Studies have shown that people with diabetes who anticipate stigma from their doctors are reluctant to seek care, not honest about their symptoms, and may stop treatment too soon.

Let’s get rid of the diabetes stigma

We must keep an eye on ourselves – and each other – and check the way we talk about diabetes so that we can help reduce misinformation. These changes can be small: your words are powerful, so pay attention to how you speak about yourself, and how you speak to others.

When talking to people with diabetes, address them as people first, instead of referring to them as ‘diabetics’. Also, make sure you’re not labelling people without diabetes as ‘normal’ – this makes it seem as though people with diabetes are not normal. 

Make sure you understand your condition as best you can – connect with others you can relate to. If you happen to notice someone with diabetes being stigmatised, speak up. Educate others by sharing accurate information. 

Many people with diabetes experience various forms of stigma. Through education and ongoing support, we can work together to overcome these challenges. Let’s all be more encouraging about living with diabetes – we’re all in this together!

What to read next?

Language Matters: The words we choose, and the way we use them, influence, persuade and affect how people view the world. Words do more than reflect reality: they create reality.

Why does the language of diabetes matter? We asked Renza Scibilia, one of the original authors of the #LanguageMatters position statement that started the movement. Here’s what she said.

Let’s talk about diabetes stigma: We asked our South Africans with Diabetes community to share if they felt there was diabetes stigma in SA. They had a lot to say.

Photo by AllGo – An App For Plus Size People on Unsplash