“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!"
 

My diagnosis came about by chance. I hadn’t been experiencing any of the typical signs and symptoms of type 2 diabetes. I went to the GP with a chest complaint, the GP ran some blood tests one of which was my long-term blood sugar level called HbA1c and I was diagnosed with type 2 diabetes. I was shocked and felt numb.  

There is no history of diabetes in my family, and up to that point I thought type 2 diabetes was a condition only older people develop - I am only 29. I then felt absolutely devastated because the GP went on to talk to me about serious complications associated with diabetes and diabetes medications. I burst into tears. 

My GP recommended I started taking diabetes medication and said that a diabetes nurse would contact me within a number of weeks to carry out the checks it is important to have when you have diabetes, like checking my blood pressure, weight and feet.  

I felt really strongly about not immediately going on medication and I asked if I could hold off on starting tablets and try managing my blood sugar levels by making changes to my diet and introducing exercise into my life. My GP said yes as long as I agreed to closely monitor my blood sugars levels using a blood glucose monitor that the practice gave me and let them know if they remained high or I was worried. 

Our son Eddie is 5 and was diagnosed with type 1 diabetes just before Christmas 2021. He was 3 and a half years old, and it came as a great shock to us as no one in our families has diabetes. 

I found it very difficult coming to terms with Eddie’s diagnosis and I didn’t realise the impact it would have on our family and our day to day lives.

"I really struggled with my mental health, and I had to go to my GP to ask for support. It was a difficult step, but I am so glad I did it. I knew I had to be there for my family and if I wasn’t well then it would make everything more difficult." 

Whilst the medical care was amazing, we didn’t find there was much support near us for families who have newly diagnosed young children. Being able to talk to families who had been through it already or anyone who could relate to the trauma involved, particularly in those early stages, would have been invaluable. We don’t want other families feeling like we did in those early days after diagnosis.

Nine months after Eddie was diagnosed, we went on a Diabetes UK weekender for families in Cambridge. It was just the right time for our family and something we could all do together. It was absolutely amazing. I cried and my husband cried. There were lots of volunteers in their 60s who had type 1 diabetes and they reassured us that Eddie was going to be OK and that they had had a very nice life. It helped us a lot.