James's story: From changing diagnosis to changing the community

Where do I begin with my diabetes story?

It happened during the summer of 2012, whilst on a family holiday to Europe. My family and I were taking a casual stroll around Warsaw, and I can vividly remember asking my gran, how do I get tested for diabetes? Her response was “ask the doctor!”

I remember casually thinking to myself, wow, it’s as easy as that. I knew I had the symptoms – I was unable to quench thirst, I had weight loss, and I was still hungry – all things that ,I must admit, stick with me even now. When I came back from our trip, I went to the GP. I had two fasting blood tests done, just to be sure. And before I knew it, I’d been invited to the diabetes centre at St Helier Hospital in Surrey.

This was where they broke the news - I was diabetic.

It was a big shock to the system. Originally, I was treated for having type 2 diabetes through changing my diet and taking oral medication. However, back then, that approach was no good for the job. The levels needed to come down, so I was put straight onto insulin within the first six months of diagnosis - still only being known as someone living with type 2 diabetes.

It wasn’t until some years later - in 2018 - that my official diagnosis came through thanks to the Earlswood Diabetes Centre. They asked me to go for a blood test, which I think was sent to Exeter. It was away for a while, and when it came back, it said with a probability of more than 95% that I was likely to be living with type 1 diabetes.

It was great for me to know for sure at that point. Since then, I’ve had issues with my legs and eyes. I had a bout of cellulitis and then diabetic macular oedema in my left eye, which now is happening in my right eye. My advice to newbies is this - treat your diabetes with respect.

One of the things that annoys me is the phrase that goes, “are you sure you can eat that?” It does my brain-box in. So, I decided in my infinite wisdom that I’d become a volunteer, with the hope that someday as a community we can get the simple message across, that yes, you can eat that.

I think also everyone knows about health issues such as strokes, dementia, and cancer, but if you asked many people about diabetes, I wonder what percentage you’d get that know about diabetes? Very little is my view. I think people believe that if diabetes doesn’t affect them personally, they don’t want to know. So, my philosophy has been “if I can help educate people by joining Diabetes UK, so be it.”

Making a difference

At the moment, I have two roles with Diabetes UK. The first is as an events volunteer and the second is a community micro-volunteer. I enjoy being able to do things involving social media and find that most comfortable. I had a task recently where I had to hand out advertisements for a new support group in the Swindon area. Because of the pandemic, I didn’t want to go around from surgery to surgery, so I decided to email loads of community areas instead, including leisure centres, libraries, and pharmacies.

I hope to be able to participate in some face-to-face events in the future, and to be more active on social media. I’d also like to see an increase in training, and for me personally I’m hoping my volunteering experience can help me in writing the book I wish to produce. Of course, I understand that permission may well be required first!