It does get better

I was 14 when I was diagnosed with type 1 diabetes. Looking back, I had the classic four Ts: toilet, thirst, tiredness and getting thinner. It really came to light on Christmas Day, when I drank an entire bottle of sparkling grape juice because I was so thirsty. My mum knew something was not right.

A few days later, my dad collected me from school to see our GP. A finger prick test showed my blood glucose was 17.1. That number meant nothing to me then, but it means a huge amount now. The doctor said it was almost certainly type 1 diabetes and sent us straight to hospital. I had been diagnosed before developing diabetic ketoacidosis, so I did not need to stay overnight, but it was still a deeply upsetting and scary experience. Suddenly I was learning about insulin, injections, blood glucose checks and how to fit all of that around school.

My grandparents helped me see how much diabetes care had changed. My grandmother had been a nurse in London in the 1950s, while my grandparents on my dad’s side were both pharmacists. They remembered urine testing, glass syringes and animal insulin. They were amazed by my blood glucose meter, insulin cartridges and tiny pen needles. What felt frightening and intrusive to me looked revolutionary to them.

Why I kept my type 1 diabetes secret

For years, I kept my diabetes secret. I was embarrassed and worried people would see me as fragile or sickly. At school, I had encountered descriptions in biology lessons of people with diabetes as ‘pale and fragile’. After diagnosis, some people did wrap me in cotton wool. I did not want diabetes to become the first thing anyone noticed about me, so I became very good at hiding it.

That began to change at university, when being open became important for my safety. One day, a housemate spotted my insulin pen and asked to see my diabetes kit. He was curious, not judgemental. He was scared of needles, so I showed him how tiny the pen needle was. That simple conversation changed something in me. Later, wearing a pump and continuous glucose monitor made my diabetes more visible, and meeting other people with T1D helped me feel part of a community.

Openness also helps me challenge misconceptions. Type 1 diabetes is not caused by eating too much sugar, and it is not anyone’s fault. People with T1D can eat sweet food. 

Another dangerous misconception is that insulin should be given when someone is having a hypo, or low blood glucose. Insulin lowers blood glucose further, so a hypo needs fast acting glucose, such as sweets or a sugary drink.

What I would tell my younger self about T1D

I would tell the 14 year old me that he can be optimistic. I hated finger pricking and injections, and I could not imagine the technology I use today. I would also tell him there are many people who understand life with T1D. There is a huge, supportive community out there. It does get better.

Daily life with type 1 diabetes

I now use a hybrid closed loop system. It is a bit like autopilot. I still tell it when I am going to eat and estimate the carbohydrates in my food, but it can respond if my glucose starts moving too high or too low.

The technology lightens the load, but it does not remove it. From the moment I am awake, I am making decisions about food, walking, work, stress, illness, temperature and whether I am going out later. I carry something sugary in case my glucose drops. I keep an eye on the number on my phone, rather like watching a car’s speedometer, except I can never switch it off. T1D is there 24 hours a day.

Some days are rubbish. A low can lead to overtreating, then a high, then another correction, until it feels like a roller coaster. All of that can happen while I am meeting a deadline, reporting on a breaking story, interviewing someone. Sometimes, after making diabetes decisions all day, even deciding what to have for dinner feels like one decision too many. That is the mental load people may not see.

What I want people to know about type 1 diabetes

Living with that constant responsibility can be hard, and type 1 diabetes is serious. But it is not the end of my life or my world. I can be a journalist, make podcasts, report on stories, travel, see friends and eat pretty much whatever I want. It takes more planning and more decisions, but diagnosis did not curtail my life. I am living a happy, active and interesting one, with plenty of ambitions still ahead.

My hopes for the future of type 1 diabetes care

I am excited by research towards a cure, but I try to live in the here and now. What excites me most is how closed loop technology will keep improving, perhaps towards systems that can do even more without constant input from us.

My hope is that everyone with type 1 diabetes who wants this technology can access it. I am incredibly fortunate to receive my care through the NHS, but pumps, continuous glucose monitors and insulin remain out of reach for many people around the world. Better technology matters, but so does making sure it reaches the people who need it. For me, that is what hope for the future looks like.