There’s no doubt that diabetes is hard and exhausting. We think that parents carry the overwhelm so that children can just be themselves, but it takes a toll, and it’s important to have strong support networks around you. We’re now at a stage where Gracie is looking after her diabetes more independently – which can, of course, bring stress and anxiety, but we have good communication between us as parents and with all who care for her. It takes a lot to trust others in caring for your child and you never get over that feeling of anxiety but seeing Gracie so happy makes every sleepless night worthwhile.

"Those early months were the hardest: no full nights of sleep, endless finger pricks, the constant weight of decisions. Over time, with support, it became easier for us."

For other parents in a similar position to us, seven years ago, we think the first stage is really making sure you and your family understand the condition and what it means for you. It can be super overwhelming and sometimes confusing to get advice from others who are much further ahead on that journey for you.

When you’re ready – there are some great online support groups out there – they can be great places to learn. Everyone’s journey is different, but sharing with people who understand makes a world of difference. 

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!

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.

All this information was news to me, and I had no prior understanding of the complexities of type 1 diabetes. I probably held some stigma about type 1 before I was diagnosed. I thought of diabetes as something that happened to older people or people who didn’t take care of themselves. Since my diagnosis, I’ve realised how common this misconception is, and I now make a conscious effort to correct it whenever I speak about my condition.

Like many others, I was confused about the difference between type 1 and type 2 diabetes. I felt ashamed of what I didn’t know and what I thought others might assume.

"It turns out I wasn’t alone in my thinking, and that many people living with diabetes have felt discriminated against or stigmatised, even sometimes in a healthcare setting."

After trying to learn everything about my condition the night before, Christmas Day arrived. It was a Christmas marked by anxiety, and I was constantly sneaking away to cry in private. Not because I had to inject insulin or because I was sick. But because I felt like my future had been stolen.

I’m grateful I had a great nurse who kept in contact with me during the day, but when she had to step away from work for personal reasons, I felt completely alone. I don’t blame her at all, or the NHS – we were going through a pandemic at the time. But the truth is, there was not enough structured mental health support. I think this is where improvements are paramount. The emotional impact of a diagnosis is huge.

Experiencing hypos

The emotional toll of my diagnosis was only exacerbated by the intense physical impact of diabetes. I still remember my first hypo, marked by dizziness, a pounding head, heightened senses, and an overwhelming urge to snap, often at my mum, which left me feeling guilty later.

Hypos are dreadful. They leave me shaky, weak, and anxious. I watch my blood sugar drop, then check obsessively, hoping it’ll rise, terrified it won’t. I’d read stories of people having seizures or blacking out during a hypo, which scared me far more than high blood sugar ever did. But hypers (high blood sugars) weren’t easy either. Though slower and less dramatic, they felt like wading through a fog, heavy, lingering, and exhausting, like the morning after a bad night out. Both extremes drained me in different ways, physically and mentally.

"Honestly, the months after my diagnosis were consumed by fear; it felt like everything I did carried some kind of risk."

I stayed at home, isolated by lockdown, and this new identity I didn’t understand yet. At the time, I was meant to be completing a primary education degree, but I couldn’t think beyond the next injection. I often spiralled by obsessively searching on the internet – this heightened anxiety is definitely something I feel is experienced by many people living with diabetes.

I was scared to fall asleep, worried about injecting the right amount of insulin and taking the correct amount of sugar whenever my levels crashed. Over time, the fear and exhaustion took a toll. Anxiety crept in, followed by depression. I was prescribed medication, but it barely touched the emotional weight I carried. Living with a condition like this every day was simply overwhelming.

Seeking support

"Looking back, I feel a little frustrated that I wasn’t signposted to support services like Diabetes UK for support, or online forums where other people living with diabetes shared their experiences. I would have found talking to others like me invaluable."

The NHS and much academic research rightly focus on stabilising blood sugars, training you in injections, diet and of course, amazing medical and technological interventions. But I felt I needed more support with grief, identity loss, and the fears that accompanied this condition.

I ended up returning to university, but I wasn’t okay. I partied excessively, ignored my blood sugars, and watched them climb into the 30s. I was self-destructing because I didn’t know how to live with this condition. I eventually dropped out and stopped trying.

And then I got my Freestyle Libre 2 sensor. It was life-changing. I could check my sugar levels with my phone. No more finger pricks, no more guessing. I started to sleep again, knowing the alarm would wake me if I was crashing overnight. It was the first sense of control I’d felt in months.

After a while, I then noticed the weight gain. From 9½ stone at diagnosis, to 12 stone five months later, I was heavier than I’d ever been. I felt like a stranger in my own body. I figured it must be the insulin, as I had read somewhere that it can cause weight gain. I became so self-conscious that I began to limit my insulin intake, for fear of gaining weight. Later, I learned that this behaviour, known as insulin omission, is worryingly common among young adults with type 1 diabetes, even though it’s extremely dangerous.

I soon realised that this was reckless and started researching the link between insulin and weight gain, something that had never been discussed during my diagnosis. I found forums and studies that validated what I was feeling. Slowly, that curiosity about the mind, identity, and coping began to grow. With that curiosity came an unexpected sense of clarity.

Having lived through a profound psychological upheaval, I became deeply fascinated by human behaviour, particularly how individuals respond to trauma. Type 1 diabetes, for all that it has taken from me, also gave me something I had previously lacked: direction.

Prior to my transplant, there were points where I was running on empty, barely able to make it through the day. I don't even know how I managed to hold down a full-time job while my kidney function plummeted. I remember coming home from work, making dinner, and going straight to bed. I had no life outside of work, and my weekends were spent resting just to survive the next week. But somehow, through all that exhaustion, I kept going.

Resilience played a huge role in this. The one thing that kept me going was focusing on what I could control. While my diabetes management had faltered, once I was faced with the reality of a transplant, I knew I had to focus on staying strong and positive. I couldn't afford to fall apart emotionally, so I just took it one step at a time.

That mindset is something I've carried with me post-transplant. I have to take multiple medications daily, deal with an increased risk of infection, and live with the fact that my immune system is suppressed. But I try to stay focused on the positives. I'm alive. I'm healthier than I was before, and I’ve gained a second chance.

The emotional journey

The emotional side of the transplant was just as significant as the physical. I remember lying in the hospital next to a fellow patient who didn't make it through their surgery. The person across from me had been dealing with transplant complications for years. It was a stark reminder that while my outcome had been positive, not everyone is so lucky.

On top of that, I felt an immense responsibility toward my donor. My donor saved my life, and I felt that I owed it to her and her family to make the most of this second chance. This sense of gratitude and accountability helps me stay focused, especially on difficult days when the thought of taking more medication feels overwhelming.

"I’m also in touch with my donor’s family, and they have become like extended family to me. My donor, Sally, lost her life to meningitis, but in the wake of that tragedy, she saved five lives. That’s a powerful reminder of the beauty of organ donation, and it gives me even more reason to live fully and healthily in her memory."