Dashiell’s story: life will change, but you still very much live it

My brother was diagnosed with type 1 diabetes a few years before me, so when I started to experience symptoms of extreme thirst, frequent urination, weight loss and lethargy, my parents knew exactly what it was. I went to the GP and they performed a finger-prick blood test, my blood glucose levels were sitting somewhere in the 20s. From there, we were sent straight to the hospital for further tests, after which, we were told it was likely a kidney infection and were sent home, but my parents weren’t convinced.

My lingering memory from that hospital visit was the toast and marmite they gave me with the bread only toasted on one side – who does that? At home, my mum saw me getting worse and knew I had the same thing as my brother, so she took me back pretty much straight away and within a matter of days, I received my diagnosis. 
 

Weirdly, I felt really happy. You have to remember, I was very young and the baby of the family (there’s just me and my brother, and I’m the youngest by 13 years). So, seeing my brother get all this attention after his diagnosis… well, I wanted some of that back. When I was diagnosed, I was the centre of attention again. Once I understood the reality of living with diabetes, that feeling wore off pretty quickly!

I felt really well looked after by the nurses and consultants who treated me. As far as information went, I tended to rely on them and my parents, rather than seeking out information for myself. My parents got a huge amount of support though, and my post-diagnosis period went as smoothly as anyone could hope for.

Many, many years later, when I lost my dad, I saw a grief counsellor who really helped me through. During our initial conversation I realised I knew her… she was one of my diabetes nurses when I was first diagnosed. She’s still awesome, in case you were wondering!

When I was first diagnosed, I was put on twice-a-day insulin injections. Doses were fixed and, no matter what, I had to eat a specific amount of carbs at each meal – it didn’t matter if I wasn’t hungry, or if I was still hungry after eating.

In my mid-teens I was switched to basal-bolus – one injection of long-acting insulin at night as a baseline and fast-acting whenever I needed it to cope with food or high blood sugar. It was a whole new world and, looking back, I can see what an amazing upgrade that must have been for little me. As I’ve spent most of my life on basal-bolus, I’ve noticed the ways in which it doesn’t quite mesh with my lifestyle. So many injections, so many finger-pricks…and I’m ADHD which makes it trickier to keep on top of taking my insulin. It’s a great system but I found it exhausting.

Nearly 20 years ago, I remember reading about specific pumps that would work alongside a continuous-glucose monitor (CGM). I wanted one desperately and I’d even offered to buy the pump myself – but the consumables like reservoirs and infusion sets wouldn’t have been covered by the NHS if they hadn’t provided the pump, and it would have worked out too expensive for me.

The impact of tech

In the early 2010s, I went on a carb counting course as I was told this could be the first step of my journey to getting on a pump waiting list…but unfortunately this didn’t happen. I was told the same thing just a couple of years ago. However, this course ended up being a real turning point.

I’d been using a CGM since 2018 which I’d self-funded for a period of time before it was then NHS funded. I’d struggled with my blood sugars, and was in range about 20% of the time. When I attended this carb counting course, I was determined to change this around. With their help, I managed to get to 80–90% time in range, but this process required lots of injections to micro adjust and correct my blood sugar and was quite exhausting for me.

"With that, I ended up on a waiting list and in April 2024, I received hybrid closed loop. I cannot possibly express in words exactly how much this little device has changed my life. To me, it almost feels like I can forget that I have diabetes until it’s almost time to eat."

I only wish I’d known how much keeping my Tamagotchi (throwback to the handheld digital pets!) alive as a kid was training for adulthood – except now it’s more high stakes, as that little creature I’m looking after is me.  
 

The trouble with being diagnosed with diabetes as a kid is that all kids generally believe they’re immortal. I heard some of the scary stories around what can happen if blood sugars are out of the healthy target range. It all sounded like problems for older me to worry about. Then one day you are older, and you want a time machine so you could go back 30 years and give yourself a good talking to.

That being said, I have been quite fortunate in terms of my experiences with diabetes related complications. I’ve had background retinopathy since around 2016, but my optician always used to say he couldn’t tell I’d lived with diabetes for so long based on the condition of my retinas…and I was proud of that. Then a couple of years ago, I was informed that it has progressed to diabetic maculopathy – a condition whereby my macula (part of your eye which provides us with our central vision) was damaged. Suddenly I was dealing with twice-yearly diabetic eye screenings and the possibility of losing my sight because of this.

"Luckily, this was around the time I went on my carb counting course and started using my insulin pump – a few months ago I found out I have improvement in the condition of my macula and I now just have background retinopathy which is being monitored at my diabetic eye screenings. I cried with relief."

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."

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! "

When I was first diagnosed, my parents were told about the British Diabetic Association (BDA, now Diabetes UK). While it was a long time ago and my memory isn’t great, I remember that leaflets and Balance magazine were a constant presence in our house. I remember that no matter what happened, my parents always seemed to have access to some kind of material that held the answers, usually from the BDA. In particular, The Diabetes Handbook: Insulin Dependent Diabetes (how type 1 diabetes was referred to previously), which was produced in collaboration with the BDA, was always within reach.
 

I’m not the most active person, but I do love a good walk and that’s why the Wellness Walk in Manchester caught my eye. My husband and I took part in charity walks when we first met, so seeing one pop up on social media that’s in one of my favourite cities and for a charity that’s so close to my heart? I had to sign up. The minute I knew my husband had the day off work and I knew whether I was signing up for one person or two, I was straight onto the website entering my details.

As I’ve been thinking about the upcoming walk, I remember when I was a lot younger my mum did a walk for Diabetes UK. I lost her a few years ago so it’ll be lovely to do this in her memory, and in thanks for all she did for me. I know she’ll be right by our sides as we walk. I’m so looking forward to the opportunity to enjoy the fresh air, get some exercise, and – most importantly – talk my poor husband’s ear off. Honestly? All that and a sit down with a nice cup of tea at the end sounds perfect.

"The presence of Diabetes UK (or the BDA, as it was when I was diagnosed) made my parents’ lives so much easier as they adjusted to raising children with diabetes. Diabetes UK is a fantastic organisation that actively change lives every single day. I couldn’t be prouder to walk for the charity."

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.