Nikki’s Story: stigma within our community can make it harder for people to open up and seek help early

I come from a large family and am the youngest of three children. We’re first-generation Caribbean – my mother was born and raised in Guyana, South America, and my father in Jamaica. He came to England in the 1960s and my mother in the 1980s. I’m a social worker by profession, a job which I feel deeply connected to because it allows me to work closely with people and communities. I am also involved in the Flagz Mas band, which is really special to me – it gives me the chance to celebrate my heritage, create unforgettable experiences, and be part of a community that feels like family. Being able to contribute to something that brings so much joy and unity is deeply meaningful to me. 

Unfortunately, diabetes has cast a long shadow over our family, especially as more members began to show signs over time. My dad has lived with type 2 diabetes since the 1980s and is insulin dependent. My two older brothers have also been diagnosed, and on a wider scale, my grandparents and an uncle lived with it too. 

"My eldest brother was diagnosed when he was 34 – he started showing common symptoms: constant thirst, frequent urination, extreme fatigue and losing weight without trying to."

 At first, he didn’t link those symptoms to diabetes. Things worsened during a family holiday in the US, where he sought medical advice and they told him he was showing signs of diabetes. Following his return to the UK, he saw a GP and got the diagnosis. 

My middle brother followed a similar path in 2024, with a diagnosis in his early 30s as well. Both of my brothers were diagnosed at around the same age as my father. 

Each family member’s experience has been different. My dad for instance, never really opened up about how diabetes affected him emotionally. He’s a proud man and has always kept a stoic front. Even now, he won’t speak openly if he’s feeling unwell. He managed it mostly in silence and I think that set the tone for the rest of us.

My brothers had a much harder time coping. Their diagnosis came with more emotional and physical turmoil, and they both struggled to understand what was happening to them initially.

"Support was there in the form of family, but I think they lacked access to clear, digestible medical information early on."

There was a lot of fear and confusion, especially with the changes that were suddenly required.

They both felt overwhelmed, scared and in denial at first. There’s a strong sense of shame in some communities around illness – especially chronic conditions like diabetes, and I saw that play out in how my brothers processed it.

Supporting my family

As a family member, I felt helpless at times. I wanted to support them but didn’t always know the right way. There’s also the emotional toll of watching someone you love suffer through something that feels preventable, yet in some ways, for our family, felt inevitable.

For other people in a similar situation, I’d recommend being patient and listening more than you speak. Diabetes can be taxing emotionally, not just physically. Offer support without judgement. Educate yourself – it’s easier to be supportive when you understand what they’re going through. Also, try to encourage them to build habits slowly rather than expecting overnight change.

Initially, my brothers both relied heavily on medication. Over time, they’ve learnt more about managing their condition through changes to diet, exercise and having better sleeping habits.

My eldest brother was taking metformin, which he really did not want to be on, therefore he focused his energy on getting fitter. He participates in Brazilian Jiu-Jitsu and has aspirations to compete in amateur competitions in the UK. It hasn’t been linear and there have been setbacks and periods where his management has slipped.

For my other brother, his diagnosis is still quite new to him and there have been times when he's experienced blood sugar lows when he's been out and this has been scary for him. He also had to get used to taking insulin at work and administering this during the day.

But overall, they’ve become more informed and proactive, especially with regular check-ups and monitoring their blood sugar levels. 

The impact of diabetes can be far-reaching. It’s affected nearly every aspect of life, from work and energy levels to how they travel or plan holidays. There’s a constant mental calculation around meals, medication timing, and avoiding stress. Socially, they sometimes avoid gatherings where food might be a temptation, or they feel anxious about explaining their condition. It’s isolating at times, but they’re learning to find balance.

"We have found, especially within the Caribbean community, that it’s sometimes a lack of understanding about diabetes that can cause stigma to arise. It’s often dismissed as something you 'just deal with' or is associated with personal failure, which is deeply unfair. That stigma makes it harder for people to open up or seek help early."

Luckily within our family, we’re very open with one another – our family group chat is always buzzing away with updates about our everyday life. When my brothers test their blood sugar, they will put in a reading and it will be discussed in a jovial way, there is no stigma at all.

Complications  

Our family has also had a brush with what diabetes-related complications can look like. My eldest brother has experienced issues with his vision and is under the care of specialists – while it’s being managed well, it’s a constant reminder of how serious the condition is. My dad has also had foot issues over the years, which required additional care.

Finding what works for you

Routine and education have been key for us. Learning about what foods impact blood sugar, the importance of consistent mealtimes, and staying active has helped us. Also, a mindset shift from seeing diabetes as a punishment to seeing it as a condition they can live well with has been powerful. When they feel empowered rather than defeated, they do better.

Family support has been a constant, but it’s mostly been emotional rather than practical. They’ve also had some good input from their GPs and diabetes clinics. My eldest brother is in IT and his natural go-to is to research absolutely everything. He has accessed support from Diabetes UK directly, and I’ve also found the website and resources incredibly helpful when trying to understand more about the condition. 

As I mentioned, life with diabetes can be taxing – especially when it comes to misunderstandings around the condition and its causes. Genetics, socio-economic factors, and access to healthcare play a huge role. I think people with diabetes carry an invisible burden every day that takes mental energy and emotional strength to manage.

Having seen my brothers navigate their journey with diabetes, my advice to others would be to start small. Don’t try to overhaul everything overnight. Focus on learning about your condition, ask questions, and build a routine that works for you. Also, find a support system – it makes a big difference. It’s also really important to remember that it’s okay to have bad days – and it’s possible to get back on track.

"Diabetes is a family condition in more ways than one. It doesn’t just affect the person diagnosed – it touches everyone around them. But with the right support, education, and mindset, it’s absolutely possible to live a full and meaningful life."

As I get closer to the age my brothers and father were when they were diagnosed, I do worry about it. But I also know there are things that I can do to reduce the risk, and with the support of the tools on the Diabetes UK website, I know that I am in good hands.

I hope that by sharing our story, it helps others feel less alone and more empowered to seek help and take control.

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 Support 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.