In December 2015, I received a kidney and pancreas transplant, a surgery that would dramatically improve my life but that was also full of emotional highs and lows. I felt relieved that I was finally getting the care I needed, but there was also fear. Transplant surgery is a massive procedure, and lying on that hospital bed, I had to come to terms with the fact that I might not wake up.

After the surgery, the transformation in my physical health was incredible. For the first time in years, I had energy. I could walk miles and felt alive again. But it wasn't without its complications. Just eight weeks post-transplant, I developed a bowel obstruction that required further surgery. There were also countless adjustments – drinking 10 litres of water a day, adapting to life without insulin but with a new set of medications, and coping with frequent urinary tract infections due to my immunosuppressed state.

It's important for anyone considering or awaiting a transplant to understand that it’s not an easy fix. Transplantation comes with lifelong consequences – from medication management to lifestyle adjustments. You don’t just get to stop worrying about your health afterward; it’s a new chapter of challenges.

Stigma

"Living with diabetes has often made me feel isolated and self-conscious. From the beginning, there was a stigma attached to managing it publicly. I remember feeling embarrassed when I had to take insulin in front of others, whether in a restaurant or at work."

At one point, my colleagues reported me to management because they didn’t want to see me administering my insulin. I was told to do it in the bathroom, which only heightened my sense of shame. It was an uncomfortable reminder that, even though I was just trying to stay alive and manage my condition, it made others feel uneasy.

The stigma wasn’t just at work. I carried that anxiety into social situations, especially during my school years. There was another girl my age with diabetes, but she was in the ‘cool’ group, and I didn’t feel comfortable approaching her to talk about our shared experience. I didn’t want to be seen as ‘different’ or ‘weak’. This mindset followed me into adulthood, where, despite all the medical knowledge I had access to, I still felt hesitant to openly talk about or show my diabetes management in public spaces.

Managing diabetes with technology

Managing diabetes, especially during those early years, was a struggle. I didn’t fully understand how to adjust my insulin doses based on what I ate. It wasn’t until I took a carbohydrate counting course that I finally began to understand the relationship between food and insulin. By then, I had already been living with diabetes for over a decade, and damage had been done.

When I was 29, I was finally given an insulin pump, which was a game changer for me. Paired with a continuous glucose monitor (CGM), I was finally able to better manage my blood sugar levels. The technology made it easier to live with diabetes, but I still had to confront the years of not managing my diabetes well that led to complications like neuropathy in my hands and kidney failure. The pump and CGM helped, but they came too late to prevent damage caused by years of inconsistent management.

One winter, I went to Lundy, an island in the Bristol channel that’s owned by the National Trust. It was an amazing adventure, going on holiday on my own by helicopter to this remote place for the weekend.

While I was there, a crazy storm hit, and we couldn’t get off the island for eight days. Luckily, I had taken extra diabetes supplies. 

Lundy’s so wild and remote. You’re completely at one with nature and surrounded by the ocean. I loved it.

I applied to be the island’s warden, surveying wildlife, doing environmental protection, working with the RSPB and doing visitor engagement, and I got it!

Lundy has a population of 28, so it was a strange little bubble to exist in.

My diabetes supplies were shipped from the mainland three times a week, but it’s a really harsh physical environment to live in, and my diabetes appointments fell by the wayside. I’d forgotten how important those are to keep up with, and I guess I felt a bit invincible.

It’s not just in healthcare where Bethany has experienced stigma – she’s felt it from other people living with diabetes too. 

“I have quite a high insulin sensitivity, so when I take insulin, I need to take quite a lot each time. When I’ve tried using online forums and websites in the past, people have judged me or felt the need to comment on it. The people who you think are supposed to be there to help and support you can end up doing the opposite.” 

The impact of stigma can be wide-ranging and Bethany herself says she’s had a bad time of it.

“I’ve felt a lot of stigma around injecting – either feeling like I need to do it somewhere in private, or people round the table asking me not to do it in front of them. 

“I got to the point where the lumps and injecting all the time basically gave me a fear of needles and I had a period of around six months where I had high blood sugar all the time because I didn’t want to inject.” 

Stigma also has an impact on socialising. Bethany says that a lot of the time she has to really decide if she can be bothered to go out for a meal with friends as the questions about why she’s spending time working out carb content wear her down.

One of the most common things we know people with diabetes hear is ‘can you really eat that?’ and Bethany says this impacts her a lot. “I don’t want to just go out and have a salad, but it’s usually the easiest option to avoid a lot of questions, but it isn’t really what I want.” 

It was love at first sight for Douglas and Jane when they met in the chairman’s office at the London Metal Exchange, Douglas recalls. Jane, then 48, was the chair’s PA and Douglas, 51, had come to meet the chairman. He was hoping for an invitation to one of the state banquets Douglas organised for heads of state, as a ceremonial assistant to the City Remembrancer. 

Douglas, a former soldier said: “Eyes met and that was that. It never faltered. We lived in romantic love for the next 39 years. Jane was a great communicator – her profession was public relations and she had worked all over the world. She was very good at getting on with people and people loved her. 

Jane was diagnosed with diabetes around 20 years after they got together. Both her parents had had diabetes.

"I was 100% with her, making sure she was taking insulin. I’m a bossy person, she didn’t need me to check up!"

“I had lists in my kitchen of foods that Jane said she mustn’t eat, could eat whenever she liked and could eat occasionally and food she would never eat, to help me when I cooked a meal for her. Diabetes was just part of life.” 

I constantly worried about Eddie for the first year, whether his bloods were in range, worrying when they weren’t and even worrying when he started to run around like a typical three-year-old would. I’d think, ‘oh no, he is going to have another hypo’. I didn’t want to stop him joining in with his friends and having a nice time so I just tried to deal with it as best as I could. 

We still find that so many things can affect Eddie’s blood sugars: being active, being upset, being excited, being hot or cold, being poorly, being tired.

Holidays

One thing we find tricky is going on holiday with Eddie. If we go abroad, the heat affects his levels and the first time we went away after his diagnosis, his bloods went really low. He was also very active by the pool and so he suffered with some bad hypos which knocked him out. 

I found this so frustrating in the early days. It put a dampener on our holiday and both my husband, and I were constantly worrying about him. Now, we have learnt to follow the exercise guidelines much better, and we give him a carbohydrate snack before he exercises if he is too low. We then set a timer on my watch to top up his snacks every half hour according to the guidelines.

Coping better

Two and a half years in and I’m coping much better. I’ve been quite vocal with my friends, family, and the wider community about our difficulties as I don’t think people talk about their mental health enough.

I don’t believe anyone should feel ashamed to say that they aren’t feeling well, and I would encourage anyone in a similar position to talk to others and seek medical help if necessary.

We've met a lovely group called Gwent Children’s Diabetes. We meet a few times a year in Maesycwmmer and the group is run by an amazing group of volunteers who organise activities for the children and the parent and carers sit and chat over a cup of tea and biscuits.

We’re really lucky that at school Eddie has a dedicated teaching assistant who has been trained by the healthcare team, and who manages his bloods sugars in the day. She only contacts us if there are any problems.

We haven’t any other respite care as we can’t really leave Eddie with family and if Eddie wants to go on a play date we have to go with him. My mum helps out with babysitting and does as much as she can but at nearly 70, it feels a lot to ask.