The moment I was diagnosed with diabetes was both confusing and overwhelming. I was 15 years old, and, like any teenager, my mind was preoccupied with school, friends, and the typical challenges of adolescence. I remember sitting in a hospital room with my mum and meeting with a doctor who explained that I had diabetes and would need to take insulin injections multiple times a day for the rest of my life. I didn’t understand exactly what diabetes was.

"It felt surreal, like something that wasn’t really happening to me. I had other things on my mind, and what the diagnosis meant didn’t sink in at the time."

In the days following the diagnosis, specialist nurses visited my rural home daily to ensure I was managing my sugar levels and insulin injections. Despite their efforts, I still didn’t understand the full picture. I didn’t realise that insulin was meant to balance my sugar levels or that those levels had to stay within a specific range. I simply followed instructions without a true understanding of what was happening inside my body.

It took me years to understand just how serious diabetes is. Looking back, there were clear signs that something was wrong even before my diagnosis. I had a viral infection months earlier, and in the summer leading up to my diagnosis, I lost a lot of weight, was constantly thirsty, and experienced muscle cramps, especially after dancing. However, as a teenager, the weight loss seemed like a positive change, and I didn’t think much about my other symptoms. My focus was on school exams, friends, and, at the time, getting my first mobile phone, not on the fact that I was developing a condition that, if not managed well, could lead to complications.

The seriousness of diabetes became more apparent later in life.

For a few months before my diagnosis, I’d been feeling increasingly unwell. I felt very weak, had low energy, and was losing weight without trying. At the time, I had attributed these symptoms to my returning to work after maternity leave and looking after a little one – which usually means little sleep. I thought this was completely normal as a first-time mum, but my body was signalling that something far more serious was happening.

It was the day before my birthday back in 2017, when my life took an unexpected turn. It was a Monday when I was feeling really poorly, and my husband went to work, and my daughter was being cared for by my in-laws.

I had reached a point where I could no longer get up, open my eyes, or keep anything down. I called my parents and as soon as they arrived, they took one look at me and immediately called an ambulance.

It was a complete shock for my parents when the paramedic checked my glucose levels and questioned whether I had diabetes. The journey to the hospital was a complete blur. Upon arrival, the doctor explained that I had type 1 diabetes. My world fell apart as I grappled with the news and questions flooded my mind – it was really overwhelming. I’m grateful for the help I received that day as I had gone into diabetic ketoacidosis (DKA) and needed urgent care.

In the days that followed, reality began to sink in. My family and I received information from the consultant, but I felt confused, overwhelmed, and terrified. It was a lot to take in – learning about injections, carb counting, and the ‘honeymoon phase’ where some insulin was still being produced. I was in hospital for three days, celebrating my birthday there – I was grateful to see my daughter, who lit up the room. I knew I had to be strong for her.

“I was originally diagnosed as having type 2 diabetes and that was based largely on the fact that I was overweight. It was basically assumed by my GP that I had type 2," said Bethany. 

Not everyone with type 2 diabetes is living with overweight, and the causes of type 2 diabetes are complex. Read more about the causes of type 2 diabetes here.  

“I was fortunate that I found out without ending up in hospital, but it was purely by accident. I’d been to see my GP for something else and they told me they couldn’t make a referral until they’d tested me for two things. They told me not to worry because I definitely didn’t have either of them, but they had to do the tests anyway. When the results came back, they were positive for both things, including type 1 diabetes.” 

Bethany started her job around the time she was diagnosed with diabetes, and so her employer has been with her from the very start, and has been supportive throughout. 

“Back in the early days when they thought I had type 2 diabetes, so I was sent on a DESMOND education course and started on metformin. Unfortunately metformin did not agree with me, and when I told my GP they were happy to take me off it, but I just assumed that the people running the DESMOND course would give me a prescription for something else. I ended up without any diabetes medication for three months while I waited for the course to start. 

“At the DESMOND course we all had to mark our HbA1c on a chart, and because I actually had type 1 diabetes and no medication, mine was off the chart. At least that meant I was finally given an urgent referral to the right place.” 

Experience with the healthcare system 

Bethany’s diagnosis story doesn’t end there as her hospital referral lead to genetic testing to determine whether she had MODY or type 1 diabetes. Her first set of results got lost, leading to further delays and uncertainty about what her diagnosis was for another six months. 

“It was about a year from first being diagnosed with type 2 before they confirmed I actually had type 1. I suppose the upside to all of that is that I feel like I’ve got so much knowledge about type 1 and type 2 diabetes.” 

Bethany says she’s experienced stigma from the very beginning of her life with diabetes as her doctor assumed her weight meant she must have type 2 diabetes. Not everyone with type 2 diabetes is living with overweight, and in Bethany’s case she had an undiagnosed underactive thyroid, where common symptoms do include weight gain.  

Type 2 diabetes is a complex condition that is often mistakenly linked only to a person’s weight. While we're still uncovering the exact reasons behind it, we know that it results from a combination of factors, including our surroundings, our genes, and social influences, such as stress, mental health and access to support systems. 

“I feel like there’s a lot of stigma about how people look when it comes to diabetes. Everyone expects people with type 1 diabetes to be skinny and people witth type 2 diabetes to be overweight, and because I didn’t look like anyone’s idea of someone with type 1, I didn’t get the right diagnosis. People tend to get put in boxes or labelled with things that really aren’t true at all.” 

In December 2022, whilst studying at university, I was diagnosed with type 1 diabetes at age 18.

A couple of months prior to my diagnosis, I experienced a few symptoms and I remember being out for a meal with my flatmates and just feeling very unwell. I was nauseous, had no energy and just feeling very tired. My symptoms continued for well over a week, so I went home to my parents.

At home the out-of-hours advice line said that it was probably dehydration and exhaustion, but I was getting worse, so my mum booked an emergency doctors appointment. As soon as I went in, the doctor wanted to check my blood sugar levels which were too high for the meter to read, so he got me to do the ketone urine test and that was really high too, so I was sent off to the hospital and later that day I was diagnosed with type 1 diabetes.

My diagnosis was a massive shock. I had no idea it would be something as serious as diabetes, and I don’t really remember much during the four days I spent in hospital. Whilst in hospital I was given some information, but I also went onto Instagram to find others with the same diagnosis to see how they were dealing with it, which was really useful and by the time I left hospital I had created my own Instagram account so that I could follow them and also share my own experiences of living with type 1 diabetes.

I’ve found writing and sharing things online to be a good outlet for me to process things.

I was working all hours washing up in the Basil Street Stockpot restaurant in Knightsbridge and painting the manageress’s house so I could buy a record player. I thought I was thirsty because of all the work. I’d wake up with cramp so bad I’d bang on the wall and my mum would come in and help to straighten out my legs.

In the end, it was a friend of my mum’s who took me to hospital. I was in St Mary’s Hospital in Paddington for a week and a half. I was given insulin immediately and when they weighed me, I found I’d lost 28 pounds in two weeks.

"And I remember my eyesight got magnificently better and I could see again very clearly. I got entranced by colour and it was a sunny day and I remember if felt like the nurses had light in their eyes – the blue was so intense." 

"When my parents came to visit, I asked them to get a book to explain it. I’d never come across anyone with diabetes. My mum got The Diabetic Life by RD Lawrance. She read it first and she wouldn’t give it to me for five days because she thought it was so frightening it would kill me!"