Rebecca, 31, shares her experiences of dealing with diabetes, following her fiance’s shock diagnosis four years ago and provides tips for anyone else in a similar position
When most people think about diabetes, type 2 (the most common kind) is probably the one that comes to mind. However, around 8% of people living with diabetes have type 1 and although it used to be referred to as juvenile diabetes, around half of newly diagnosed cases are in people over the age of 18.
What exactly is type 1 diabetes? It’s where blood glucose (sugar) levels are too high, because the body can’t make a hormone called insulin. This happens because the body attacks the cells in the pancreas that produce it, so you can’t make any. The exact cause is still being researched into.
The UK has one of the highest rates of type 1 diabetes in the world, for reasons that are currently unknown. Despite these numbers, there are lots of myths out there around how it can be managed and what it’s like caring for someone who has been diagnosed.
Each year, Diabetes Week aims to raise awareness of the condition, and we want to help, which is why we asked someone who’s been there to share their experiences in a bid to help tackle common misconceptions.
Meet Rebecca, 31, a senior PR manager from London whose fiancé, John, 32, was diagnosed with type 1 diabetes four years ago. Here, she talks about what adapting has been like and her tips for anyone else looking for advice on how to best support a loved one through their diagnosis. With the right support, it’s possible to live a happy, healthy life.
Read her story below.
We had no idea that he could be experiencing type 1 diabetes symptoms
‘It all started towards the end of 2018. John had always been healthy apart from having asthma and was living a very normal, fun-filled life as a 28 year old working in London.
‘However, we began to notice a few strange changes. John started losing weight and, despite not having much of a sweet tooth, began craving sugary drinks and was thirsty all the time - I would wake up to him gulping a litre-sized bottle of Coke and still not feel satisfied after. He also needed the loo constantly, but we put this down to how much he was drinking. We didn’t have any experience with diabetes at this point and so had no idea that these could be type 1 symptoms.
‘Then, one evening at dinner, I noticed that John was completely spaced out and his reactions to things were very slow. His uncle who happened to be a doctor was thankfully there and prompted John to see a GP the next day.
I felt immense pressure to listen to every word the diabetic doctor was saying to us
‘We were referred to a diabetes specialist centre where a doctor confirmed that John had developed type 1 diabetes. As you can imagine, it was a lot for him to process. He was still quite spaced out and so I felt immense pressure to listen to every word the doctor was saying to us. I still have the notes on my phone from when I was frantically trying to write down the dos and don’ts we both needed to follow in order to keep his diabetes under control. I was absolutely terrified that if I misheard or didn’t understand something correctly, I’d be putting John’s health at risk.
As time passed, we realised that we needed to relax a little bit and not put so much pressure on ourselves
‘Straight after the diagnosis, we read every blog, website and booklet we could get our hands on and followed the advice down to every detail. It felt extremely overwhelming and seemed to take over every little thing we wanted to do, whether it was doing a food shop, cooking a meal or going out for dinner.
‘However, as time passed, we realised we needed to relax a little bit and not put so much pressure on ourselves. We came to the understanding that John can still eat anything he wants as part of a healthy, balanced diet, but just needs to make sure he injects the right amount of insulin beforehand. Fast forward three years and we live a very normal life. We’re mindful about what we cook at home together, but it’s good to know that John doesn’t have to worry about restricting himself when we eat out.
When someone goes hypoglycaemic, they can become irritated very quickly, confused or stressed
‘I’ve also learned to adjust to certain changes in John’s behaviour. When someone goes hypoglycaemic [or ‘hypo’, where the level of sugar (glucose) in your blood drops too low] they can become irritated very quickly, confused or stressed. When John goes hyperglycaemic [or ‘hyper’] when his glucose level is too high, he can become extremely tired and have difficulty concentrating. I had to quickly learn that the shifts in his mood could be signs that he should check his blood. It’s taught me that I have to be extra patient and understanding when either of these happen during certain situations, whether it’s during a meeting, on a car trip, out with large groups of people or even when we’re having an important discussion.
The biggest game changer for us was when John was able to get a FreeStyle Libre through the NHS
‘The biggest game changer for us was when John was able to get a FreeStyle Libre through the NHS. This small flash glucose monitor is secured on his arm every two weeks and can read his blood sugar levels without him needing to prick his fingers and manually test his blood. It’s as easy as taking his phone and tapping it over the monitor to get a reading – just like doing a contactless payment! It also means he doesn’t need to prick his fingertips to take blood tests any longer, as they were getting really numb and sore from the number of times he had to do it each day. The best part is you can have a number of people added to an account, meaning I can also see his readings and be alerted when his blood sugar drops too low. This gives me extra peace of mind.
‘The NHS team supporting John is also incredible. They really go out of their way to ensure he’s living a very normal life and that he has everything he needs to do this.’
I am so grateful that John is able to do almost everything he was able to do before
‘John’s doctors had warned us that it’s very common for a diagnosed individual to suddenly hit a wall a year after their diagnosis and feel quite low due to the reality setting in that it’s a lifelong condition. I tried to be mindful of this and would always make sure to talk to John and see how he was feeling, but he has always been such a positive person and has never allowed his diagnosis make him feel different.
‘There are moments when I can feel overwhelmed or frustrated, because hypers and hypos can happen at some of the most inappropriate and inconvenient times, but I always have to take a breath and remember that it’s my partner that has the diagnosis and they didn’t choose for it to happen. I’m very fortunate to have a friend who also has a partner with type 1 diabetes. It’s been great to have someone to speak to who can relate to certain situations, share experiences with and help us feel like we’re not the only people going through this.
‘John and I have had to learn and adapt together. It’s been a journey and we’re still experiencing new things each day. We’re grateful to be in a position where his diagnosis is manageable and that John is able to do almost everything he was able to do before.’
Rebecca’s top tips for those supporting loved ones with type 1 diabetes:
• Despite it being a lifelong condition, don’t let it define your lives. It will take time to adjust, but it’s absolutely manageable. With the right awareness and understanding, you can live life with very few changes.
• Respect and understand that your loved one’s entire lifestyle has had to change overnight, so give them time to process and adapt, along with your full support.
• Even though it’s not you who has the condition, it’s so important to educate yourself about how to take on some of the management. There will be times when your loved one will be unable to do parts of it on their own so it can be helpful to learn how to give them insulin, check their blood and know the signs of a hyper and hypo so you’re prepared for any situation.
• Don’t be afraid to talk to people. The more we’ve opened up to others, the more we’ve discovered other people who are also living with type 1 diabetes. It’s been great to hear other people’s advice, knowledge and learnings.
• Keep a go-to bag close to hand for whenever you go out. We never go anywhere without John’s insulin, phone and phone charger, so he can check his FreeStyle Libre. We also always pack a finger prick pen and sugar monitor as a backup in case the FreeStyle Libre isn’t working, and glucose tablets to ensure he is prepared for a hypo. Jelly babies might also be in the bag, as John likes to alternate these with the glucose tablets when his sugar level starts to drop.
For more support and resources, check out Diabetes UK and JDFR.
