As a parent of a child living with diabetes, you spend the vast majority of your time thinking about it. Before technology, we didn’t have a single full night’s sleep, and that could impact the whole household – especially if we had to treat a hypo through the night. Now we have a bit more thinking space.

Gareth said, “Gracie was lucky enough to go back to nursery, but her mum had to leave work to be on standby in case something went wrong. She has just this year returned to more substantial workloads, and that is down in part to that journey of managing Gracie’s diabetes through technology and the overall impact of the closed loop system.”

"Growing our family did feel scary, but eventually we were comfortable in the knowledge that we knew what signs and symptoms to look out for if any of our children also had type 1 diabetes. With Gracie’s siblings, we stay vigilant for any possible signs and symptoms of type 1 diabetes. That worry never fully switches off."

Impact of technology

Although our family are all incredibly supportive, there still, even now, remains a lot of fear around looking after Gracie overnight. In seven years, we can count on one hand the number of times she has slept somewhere without us. Part of that is on us not wanting to put that pressure on others, but the idea is certainly getting easier with a hybrid closed loop.

Since moving to a hybrid closed loop, we certainly travel a lot lighter for those shorter days out in terms of the supplies we need to support Gracie – no more need for needles, insulin and more. Longer trips and holidays can still be tricky as you need to prepare for all eventualities – airports are much more aware of diabetes, which is good. We have found that, as long as there is time, patience and an understanding that they aren’t as expert as you and are just trying to do their job, you should be fine.

Managing the everyday

"It's a condition that must be taken seriously, but that doesn’t mean it should take over your life."

With Gracie being diagnosed in November, Christmas was right around the corner, and we grappled with whether she should have an advent calendar, how to give the correct insulin doses for that, and more. It wasn’t until our nurse told us to just let her enjoy it and not to worry that we realised we can’t let it overcome us.

Those special occasions, such as Halloween and Easter – where chocolate and sweets take over – we feel Gracie should still be able to partake as before and are grateful to her diabetes team for support around this. This isn’t something that comes easily in the first few months. You need to be comfortable with diabetes and remember that your child can indeed enjoy these moments as they did before diagnosis.

My parents always raised my brother and me to believe we could do anything a person without diabetes could. Yes, our diabetes would make some things more challenging, but we could still achieve anything we put our minds to. I think that mindset has helped me more than anything.

I got through my GCSEs and A-levels, did my degree and PhD, got married, bought a house, and travelled for both work and fun. My diabetes has never stopped me. It’s the same for my brother, who backpacked solo around Egypt in his youth. We don’t really see ourselves as being different. We have specific needs, sure… but doesn’t everyone? We’re also incredibly lucky to live in the UK with our wonderful NHS, so I’ve never had to worry about paying for my insulin or any of the other pieces of equipment I’ve needed to manage my condition.

Finding out you have diabetes is difficult. I’m not going to lie and say that it isn’t a big deal, it is. But I found for me, it wasn’t something I couldn’t cope with – and I hope others feel the same way. Yes, life will change but you will very much still live it. You can still eat at restaurants, enjoy a drink, have relationships and hold down a job. 

"Your life will be normal – not always easy, but normal. What I love is that there’s a whole community out there ready to catch you when you fall – plus fantastic organisations like Diabetes UK to advise and advocate for you. You’ve got this! "

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. 

The lack of information available at the time motivated me to later get involved with the UK Islet Autoantibody Registry. I’m part of the project team, and can bring my dual perspective of having a child who was diagnosed late and was very unwell with DKA, and a child whose risk has been identified much earlier. So, I can see both the benefits and the challenges of early detection.

The Registry will give researchers the data they need to be able to understand more about the development of type 1 diabetes. And to explore the best ways to support people at risk psychologically and to create a proper care pathway for them. For families like ours, it will be a place to go for trusted information and peer support.

"Crucially, it will also be a place to find out about opportunities to take part in trials for new treatments – ones that could keep holding off the full development of type 1 diabetes for as long as possible."

With studies like ELSA now screening more widely for autoantibodies, there’s going to be more people identified in the early stages of type 1 diabetes. So, the Registry will be hugely beneficial.

My experience sparked an interest in the intersection between physical health and mental well-being, especially in the context of comorbid conditions. I went on to complete a first-class honours degree in criminology and am now pursuing a master’s degree in psychology at the University of Sussex.

My dream is to undertake a PhD focusing on the psychological impact of a type 1 diabetes diagnosis. I want to research the cohort I relate to most, many of whom navigated this life-altering diagnosis in isolation during the pandemic. There is so much to unpack – how diagnoses can affect identity and self-esteem, how individuals adjust to life with a chronic condition, struggle with weight issues, and deal with the internal and external stigmas they may face.

I know there will be many others like me, diagnosed during the pandemic, in lockdown, away from friends, with anxiety through the roof. I feel this is more than just an academic interest; it’s a deeply personal passion that I’m truly committed to.

Moving forward

I look back now and realise that everything I hated, the injections, the numbers, the grief, the weight gain, the isolation, led me here. To a place where I am working towards something I care about deeply. I’m committed to sharing this journey as widely as possible, so no one has to feel as lost as I once did.

This is something I want to spread awareness about, not just for myself, but for every newly diagnosed person sitting in a hospital room, hearing the words, “You have type 1 diabetes”, and wondering what comes next.

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.