I’ve never let diabetes stop me from competing in marathons and travelling the world…the fact that I’ve done neither of these things is solely due to my self-confessed laziness. Having said that, diabetes is always a bit of an obstacle. Having had it for so long, I do have to really think about how people not living with diabetes experience things to realise it.

There’s the pat down at security. There’s having to take a bag to concerts and football matches, which means bag checks instead of walking straight in. And then there’s the absolute panic of realising you don’t have a hypo snack on you. It all builds up. When I see people not living with the condition wandering around with just their phone and wallet, I do feel jealous at times.

It is what it is though, and it could be a lot worse. I could have been born in 1882 instead of 1982 and things would have looked very differently for me. So, I count my blessings and make sure I have good friends who are happy to carry my bag for me if I do a pouty face while on a day out.

Facing stigma in all aspects of life

Unfortunately, stigma around diabetes has followed me over the years and I’ve been on the receiving end of some really shocking ‘hot takes’ about my diabetes – from strangers, co-workers and sometimes even family members…

• “It’s all your own fault, if you’d just been healthier.” (Not how it works!)
• “You’re diabetic? You’ve done well to lose all the weight!” (Gee, thanks)
• “Shouldn’t you be trying to wean yourself off insulin?” (Again, not how it works!)
• “I wish I could have a chocolate bar before PE – you’re so lucky!” (I’d happily trade places!)
• [While injecting in a staff room] “Do you have to do that here?” (No, but it’s such an amazing conversation starter)
• [While injecting in McDonalds] “Disgusting. I have my kid here with me…you junkies make me sick.” (Lady, I’m ten!)
   

There are honestly about a thousand more if I stopped to think about it – it’s day in, day out. The problem seems to be that people know nothing about diabetes but think they know everything about diabetes.

"I’d love it if people would just trust the people that live with this condition day in, day out. We know what we’re dealing with, and it’d be lovely if we could take some of the burden off by being able to talk to people about what we’re going through without judgements or reference to the latest ‘miracle’ fad."

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.

It’s been 8 years now since we learnt that Jaz was autoantibody positive. For Jaz, knowing her risk hasn’t taken over her life, but it’s always there, which does bring a bit of anxiety.

When she feels unwell, it’s in the back of her mind because we were told that illness could trigger her blood glucose levels to rise into the type 1 range. And she’ll sometimes ask to use her brother’s meter so she can check her glucose levels when she’s ill. It has also been frustrating at times because there’s such little awareness of this early stage of type 1 diabetes in healthcare. Jaz often has to explain everything herself to her GP.

That’s why having support, information, and care pathways matters – and why the Registry will make such a difference.

But the first step is knowing. And I would say to any other family: yes, it’s hard, but knowledge is power. Jaz would say the same. It means that, if the tipping point comes one day and she needs to start insulin, she’ll do so right away. So hopefully she’ll have a smooth landing and won’t get ill with DKA, like her brother.

And if research keeps moving forward, we’re hopeful there will be treatments that could delay when Jaz needs insulin therapy. That’s such an exciting thought! And with the Registry, it’ll be easier for people like Jaz to access these new treatments.

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.

I would say that if you have any concerns, if in doubt, then get it checked out. There’s nothing worse than feeling that something isn’t right.

Get it checked even if it’s nothing – speak to a pharmacist, your GP or the diabetic nursing team, or if it’s about your eyes, you can also see an optician.

"It’s important that you make sure you attend every appointment. If you can’t make it, rearrange it, as if not monitored correctly, then things can quickly change."

I’m so lucky with my eyes, and although I’m in no way out of the woods, I feel I’m in a much better place now than if I didn’t go for my health checks. 

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.

In December 2015, I received a kidney and pancreas transplant, a surgery that would dramatically improve my life but that was also full of emotional highs and lows. I felt relieved that I was finally getting the care I needed, but there was also fear. Transplant surgery is a massive procedure, and lying on that hospital bed, I had to come to terms with the fact that I might not wake up.

After the surgery, the transformation in my physical health was incredible. For the first time in years, I had energy. I could walk miles and felt alive again. But it wasn't without its complications. Just eight weeks post-transplant, I developed a bowel obstruction that required further surgery. There were also countless adjustments – drinking 10 litres of water a day, adapting to life without insulin but with a new set of medications, and coping with frequent urinary tract infections due to my immunosuppressed state.

It's important for anyone considering or awaiting a transplant to understand that it’s not an easy fix. Transplantation comes with lifelong consequences – from medication management to lifestyle adjustments. You don’t just get to stop worrying about your health afterward; it’s a new chapter of challenges.

Stigma

"Living with diabetes has often made me feel isolated and self-conscious. From the beginning, there was a stigma attached to managing it publicly. I remember feeling embarrassed when I had to take insulin in front of others, whether in a restaurant or at work."

At one point, my colleagues reported me to management because they didn’t want to see me administering my insulin. I was told to do it in the bathroom, which only heightened my sense of shame. It was an uncomfortable reminder that, even though I was just trying to stay alive and manage my condition, it made others feel uneasy.

The stigma wasn’t just at work. I carried that anxiety into social situations, especially during my school years. There was another girl my age with diabetes, but she was in the ‘cool’ group, and I didn’t feel comfortable approaching her to talk about our shared experience. I didn’t want to be seen as ‘different’ or ‘weak’. This mindset followed me into adulthood, where, despite all the medical knowledge I had access to, I still felt hesitant to openly talk about or show my diabetes management in public spaces.

Managing diabetes with technology

Managing diabetes, especially during those early years, was a struggle. I didn’t fully understand how to adjust my insulin doses based on what I ate. It wasn’t until I took a carbohydrate counting course that I finally began to understand the relationship between food and insulin. By then, I had already been living with diabetes for over a decade, and damage had been done.

When I was 29, I was finally given an insulin pump, which was a game changer for me. Paired with a continuous glucose monitor (CGM), I was finally able to better manage my blood sugar levels. The technology made it easier to live with diabetes, but I still had to confront the years of not managing my diabetes well that led to complications like neuropathy in my hands and kidney failure. The pump and CGM helped, but they came too late to prevent damage caused by years of inconsistent management.