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.

One winter, I went to Lundy, an island in the Bristol channel that’s owned by the National Trust. It was an amazing adventure, going on holiday on my own by helicopter to this remote place for the weekend.

While I was there, a crazy storm hit, and we couldn’t get off the island for eight days. Luckily, I had taken extra diabetes supplies. 

Lundy’s so wild and remote. You’re completely at one with nature and surrounded by the ocean. I loved it.

I applied to be the island’s warden, surveying wildlife, doing environmental protection, working with the RSPB and doing visitor engagement, and I got it!

Lundy has a population of 28, so it was a strange little bubble to exist in.

My diabetes supplies were shipped from the mainland three times a week, but it’s a really harsh physical environment to live in, and my diabetes appointments fell by the wayside. I’d forgotten how important those are to keep up with, and I guess I felt a bit invincible.

It’s not just in healthcare where Bethany has experienced stigma – she’s felt it from other people living with diabetes too. 

“I have quite a high insulin sensitivity, so when I take insulin, I need to take quite a lot each time. When I’ve tried using online forums and websites in the past, people have judged me or felt the need to comment on it. The people who you think are supposed to be there to help and support you can end up doing the opposite.” 

The impact of stigma can be wide-ranging and Bethany herself says she’s had a bad time of it.

“I’ve felt a lot of stigma around injecting – either feeling like I need to do it somewhere in private, or people round the table asking me not to do it in front of them. 

“I got to the point where the lumps and injecting all the time basically gave me a fear of needles and I had a period of around six months where I had high blood sugar all the time because I didn’t want to inject.” 

Stigma also has an impact on socialising. Bethany says that a lot of the time she has to really decide if she can be bothered to go out for a meal with friends as the questions about why she’s spending time working out carb content wear her down.

One of the most common things we know people with diabetes hear is ‘can you really eat that?’ and Bethany says this impacts her a lot. “I don’t want to just go out and have a salad, but it’s usually the easiest option to avoid a lot of questions, but it isn’t really what I want.”