Katie's story: Living with type 1 diabetes for over 20 years 

I was diagnosed with type 1 diabetes 20 years ago, just before my second birthday.

My mum had noticed that I was experiencing all the 4T’s (toilet, tired, thirsty, thinner). At my 2-year health check, she told my healthcare team that something was not quite right with me. The health visitor she spoke to told her that she was paranoid, and that I just needed the toilet a lot, and that I was grumpy.  

My symptoms got worse, so my mum visited another health visitor and eventually they tested my urine. It came back with ketones, and I had really high sugar levels. I was taken to hospital, but thankfully I wasn’t in a life-threatening condition at the time. My blood sugar was 34 mmol/l but I wasn’t in diabetic ketoacidosis (DKA). I stayed in hospital overnight then I was discharged the next day.

Because I was diagnosed so young, diabetes just became another thing I had to do. At school I thought it made me cool and unique, and my friends had the same attitude, which gave me a really positive start. I was never ashamed of it. My teachers were really supportive too.

I currently use the Dexcom G6 (since January) and the t:Slim X2 insulin pump, which I’ve used for 11 years. It’s taken a lot to give control to the pump, but it does a good job. It takes away some of the burden. I’m very grateful for sleep mode, and the diabetes tech that’s been available for me.

I had the same paediatric nurse until I was 19 and had a great relationship with her and the rest of my team. But when I hit my late teenage years, making the transition to adults, leaving school to move to university, and taking more responsibility it all hit me.

I started to struggle with my mental health, and I became really obsessed with my blood sugar readings. It became the only thing I could think of.  

I was the first person at my hospital to be given a funded FreeStyle Libre, and I became overwhelmed. I was doing 100 scans a day. On paper it looked great, but I struggled to communicate how much I was struggling. I was striving for perfection and burning out.  

When I communicated this with my healthcare team, I painted a picture conveying, ‘I don’t know what I’m feeling but this is it’, and that’s where I started a process of how to heal and find something of myself past my blood sugar readings. That was a long process, because I moved to university during this period, with more transitions.  

I had been seeing a paediatric family therapist, but when my mental health challenges became greater, I was offered Cognitive Behavioural Therapy (CBT). I found that difficult because the CBT therapist was not there for diabetes specifically. I was grateful someone was able to do this with me, but the value was reduced. I later saw a different diabetes-related therapist and specialist dietitian which helped more, along with the ongoing support of my adult diabetes team, with whom I have a good relationship.  

I am an advocate for young people with diabetes and look for opportunities to engage young people in diabetes spaces and to create moments where creative collaboration amplifies the voices of people from across the community. 

I am a member of several diabetes networks and engage regularly with young adult diabetes spaces, including as a young leader for the Diabetes UK Our Lives, Our Choices, Our Voices project, and as an Expert by Experience for the Diabetes Research Steering Group for children and young people. 

One thing I wish I’d known is that you don’t have to reach for perfection. Good enough is often good enough, and you’re more than just the number you see on the screen.