Modupe’s story: Communities have a powerful role to play in tackling stigma

While there is a family history of diabetes, my mother is however the only family member I’m aware of who had diabetes and sadly died from complications associated with diabetes, which led to her having a heart attack. 

So, with that close connection to diabetes, it’s very personal and I’m passionate about helping others and being open about some of the challenges that are faced, especially within diverse communities.

In my experience, I’ve noticed that the service provision around diabetes care for people from diverse communities is often not up to par. 

Many people face barriers to accessing the right support – not just because of practical issues like language or resources, but also because of deep-rooted stigma and a lack of trust in health services. 

In some cases, people have had negative experiences in the past, where they felt judged, dismissed, or not fully understood. Over time, this creates a sense of reluctance to speak up, make complaints, or even seek help when it’s needed most.

Stigma within communities

Through my work, I see that in some communities, the stigma around diabetes is profound and can have a big impact on people’s lives. 

Often, this stigma starts close to home – from family members, friends, or neighbours – and then spreads through the wider community.

Some people believe that if one person in a family has diabetes, the whole family must have it or be at risk. Because of this, families sometimes choose not to talk about diabetes at all, out of fear of gossip or judgment.  

They feel that if their condition is known, it will affect their children or their grandchildren, and they might be labelled as a family with diabetes. The result is shame, secrecy, and a reluctance to discuss the condition openly for fear of being chastised.

This stigma can make people feel isolated or ashamed of their condition, even though diabetes is a common and manageable health issue.  But when the topic becomes something people avoid, it stops others from learning the truth, sharing their experiences, or getting the support they need to live well with diabetes. 

Consequently, individuals and families may avoid seeking medical support or sharing information about diabetes, which can further hinder early diagnosis, management, and community awareness.

I recall my mother never acknowledged that she had diabetes and kept her condition very much to herself – that had a lot to do with being stigmatised and not wanting family or friends to know, as she felt she would be judged. She worried they might see her differently or think that diabetes was something to be ashamed of.

I think it’s also about not wanting to share too much about your health, which tends to be a very private subject in some communities, and that other people will use their diabetes as a way of scrutinising their lives and holding them to account.

On reflection, I’ve heard people say that family members actually question their choices and, by knowing about their diabetes, they ask if they should be eating certain foods and how they need to be mindful of their diet because they have diabetes. This type of scrutiny can be very intense for people trying to manage their diabetes.

Offering support

As a dietitian, I can see how this distrust affects how people engage with healthcare advice, especially around food and their choices. So, it’s important for me to offer nutritional advice in a way that supports people without adding to any feelings of shame or stigma.

Many people with diabetes already feel judged about what they eat, so my goal is to create a safe and understanding space where we can talk openly about food and nutrition.  Some people are reluctant to seek help because of guilt.

I’ve noticed this can be especially true for those who are faith-based and have been led to believe, incorrectly, that they are personally responsible for their diabetes. Rather than focusing on restriction or blame, I emphasise balance, flexibility, and strategies that are realistic for each individual’s life.

Tackling stigma

Communities have a powerful role to play in tackling stigma.  We need to start having discussions at grassroots level, whereby local leaders, and in particular faith groups, schools, and healthcare providers, start open conversations about diabetes, so that people begin to understand that it’s not a weakness or something to hide and be ashamed about.

Community events, workshops, or even informal gatherings can be great opportunities to share information and personal stories.

It’s really important to encourage education and awareness about what diabetes really is – that it’s a health condition that can affect anyone and can be managed with the right care and support. And also, when people hear real stories from those living well with diabetes, it helps to break down fear and misunderstanding.

Families and friends can also support by showing understanding, listening without judgment, and helping loved ones manage their condition. The more diverse communities talk about diabetes in a positive and informed way, the easier it becomes for everyone to seek help, share their experiences, and live healthy and confident lives.

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Reach out for support

If you are affected by the topics highlighted within this story or other stories on our website, you can access support from our helpline team on 0345 122 2399, Mon- Fri, 9am- 6pm, or email helpline@diabetes.org.uk.

You can join our free forum – to connect with others affected by diabetes (minimum age 13). For more information, see Forum FAQs.

For those aged 11-25 living with type 1 diabetes, check out our youth programme Together Type 1 for a supportive community of people who understand what it’s really like juggling the ups and downs of life with diabetes.