All this information was news to me, and I had no prior understanding of the complexities of type 1 diabetes. I probably held some stigma about type 1 before I was diagnosed. I thought of diabetes as something that happened to older people or people who didn’t take care of themselves. Since my diagnosis, I’ve realised how common this misconception is, and I now make a conscious effort to correct it whenever I speak about my condition.

Like many others, I was confused about the difference between type 1 and type 2 diabetes. I felt ashamed of what I didn’t know and what I thought others might assume.

"It turns out I wasn’t alone in my thinking, and that many people living with diabetes have felt discriminated against or stigmatised, even sometimes in a healthcare setting."

After trying to learn everything about my condition the night before, Christmas Day arrived. It was a Christmas marked by anxiety, and I was constantly sneaking away to cry in private. Not because I had to inject insulin or because I was sick. But because I felt like my future had been stolen.

I’m grateful I had a great nurse who kept in contact with me during the day, but when she had to step away from work for personal reasons, I felt completely alone. I don’t blame her at all, or the NHS – we were going through a pandemic at the time. But the truth is, there was not enough structured mental health support. I think this is where improvements are paramount. The emotional impact of a diagnosis is huge.

Experiencing hypos

The emotional toll of my diagnosis was only exacerbated by the intense physical impact of diabetes. I still remember my first hypo, marked by dizziness, a pounding head, heightened senses, and an overwhelming urge to snap, often at my mum, which left me feeling guilty later.

Hypos are dreadful. They leave me shaky, weak, and anxious. I watch my blood sugar drop, then check obsessively, hoping it’ll rise, terrified it won’t. I’d read stories of people having seizures or blacking out during a hypo, which scared me far more than high blood sugar ever did. But hypers (high blood sugars) weren’t easy either. Though slower and less dramatic, they felt like wading through a fog, heavy, lingering, and exhausting, like the morning after a bad night out. Both extremes drained me in different ways, physically and mentally.

"Honestly, the months after my diagnosis were consumed by fear; it felt like everything I did carried some kind of risk."

I stayed at home, isolated by lockdown, and this new identity I didn’t understand yet. At the time, I was meant to be completing a primary education degree, but I couldn’t think beyond the next injection. I often spiralled by obsessively searching on the internet – this heightened anxiety is definitely something I feel is experienced by many people living with diabetes.

I was scared to fall asleep, worried about injecting the right amount of insulin and taking the correct amount of sugar whenever my levels crashed. Over time, the fear and exhaustion took a toll. Anxiety crept in, followed by depression. I was prescribed medication, but it barely touched the emotional weight I carried. Living with a condition like this every day was simply overwhelming.

Seeking support

"Looking back, I feel a little frustrated that I wasn’t signposted to support services like Diabetes UK for support, or online forums where other people living with diabetes shared their experiences. I would have found talking to others like me invaluable."

The NHS and much academic research rightly focus on stabilising blood sugars, training you in injections, diet and of course, amazing medical and technological interventions. But I felt I needed more support with grief, identity loss, and the fears that accompanied this condition.

I ended up returning to university, but I wasn’t okay. I partied excessively, ignored my blood sugars, and watched them climb into the 30s. I was self-destructing because I didn’t know how to live with this condition. I eventually dropped out and stopped trying.

And then I got my Freestyle Libre 2 sensor. It was life-changing. I could check my sugar levels with my phone. No more finger pricks, no more guessing. I started to sleep again, knowing the alarm would wake me if I was crashing overnight. It was the first sense of control I’d felt in months.

After a while, I then noticed the weight gain. From 9½ stone at diagnosis, to 12 stone five months later, I was heavier than I’d ever been. I felt like a stranger in my own body. I figured it must be the insulin, as I had read somewhere that it can cause weight gain. I became so self-conscious that I began to limit my insulin intake, for fear of gaining weight. Later, I learned that this behaviour, known as insulin omission, is worryingly common among young adults with type 1 diabetes, even though it’s extremely dangerous.

I soon realised that this was reckless and started researching the link between insulin and weight gain, something that had never been discussed during my diagnosis. I found forums and studies that validated what I was feeling. Slowly, that curiosity about the mind, identity, and coping began to grow. With that curiosity came an unexpected sense of clarity.

Having lived through a profound psychological upheaval, I became deeply fascinated by human behaviour, particularly how individuals respond to trauma. Type 1 diabetes, for all that it has taken from me, also gave me something I had previously lacked: direction.

Prior to my transplant, there were points where I was running on empty, barely able to make it through the day. I don't even know how I managed to hold down a full-time job while my kidney function plummeted. I remember coming home from work, making dinner, and going straight to bed. I had no life outside of work, and my weekends were spent resting just to survive the next week. But somehow, through all that exhaustion, I kept going.

Resilience played a huge role in this. The one thing that kept me going was focusing on what I could control. While my diabetes management had faltered, once I was faced with the reality of a transplant, I knew I had to focus on staying strong and positive. I couldn't afford to fall apart emotionally, so I just took it one step at a time.

That mindset is something I've carried with me post-transplant. I have to take multiple medications daily, deal with an increased risk of infection, and live with the fact that my immune system is suppressed. But I try to stay focused on the positives. I'm alive. I'm healthier than I was before, and I’ve gained a second chance.

The emotional journey

The emotional side of the transplant was just as significant as the physical. I remember lying in the hospital next to a fellow patient who didn't make it through their surgery. The person across from me had been dealing with transplant complications for years. It was a stark reminder that while my outcome had been positive, not everyone is so lucky.

On top of that, I felt an immense responsibility toward my donor. My donor saved my life, and I felt that I owed it to her and her family to make the most of this second chance. This sense of gratitude and accountability helps me stay focused, especially on difficult days when the thought of taking more medication feels overwhelming.

"I’m also in touch with my donor’s family, and they have become like extended family to me. My donor, Sally, lost her life to meningitis, but in the wake of that tragedy, she saved five lives. That’s a powerful reminder of the beauty of organ donation, and it gives me even more reason to live fully and healthily in her memory."

The beginning was incredibly tough. I went from hating needles to having to inject myself several times a day, figuring out dosages through some trial and error. I worked closely with my consultant to understand my insulin needs. There were moments when I got it VERY wrong, experiencing highs and, more often, dreadful hypos that left me tearful. As months passed, I began to accept my new reality.

The hypos were really tough. For me, they make me sweat, my heartbeat increases rapidly, and my words start to get mixed up. Overall, concentration gets harder, and I feel very weak. It’s a horrible and frustrating feeling, especially if you are out or if you feel like you took the correct dosage of insulin with your meal. It completely removes any sense of control you think you have.

Over the years since my diagnosis, I have experienced ups and downs, particularly at the beginning. On my 33rd birthday, I remember sobbing to my mum, mourning the loss of the simplicity of my life before diagnosis. She always reassures me, and on that day her words "You are sad, but I thank whatever divine power saved you every day," resonated deeply.

"I promised myself to see the positive in this situation. I was here, with a beautiful daughter who needed me, a loving family, and a body that just needed a bit more care."

My dad played a big part in helping me shift my mindset from “Why me”. I could see how upset he was when I was diagnosed, but he encouraged me to stay positive and accept my situation. He advised me to make the best of it, educate myself as much as possible, and be strong for my one-year-old daughter. His kind words, coupled with my deep respect for him, motivated me to live my life to the fullest and not let this new normal hold me back. 

Stigma awareness

I first became aware of diabetes stigma from Instagram posts and people talking about type 1 diabetes and type 2 diabetes and making a distinction between the two types – although over time I experienced it on a more personal level.

When I told people that I had diabetes there always seem to be that intrusive question of ‘what type?’ almost in a judgmental sort of way. Or I might be out with friends and be eating something and someone would say ‘are you sure you should be eating that?’

With my friends I know it always came from a good and well-meaning place, but it felt like they didn’t fully understand my situation and realise that I was capable of deciding what I can and can’t eat. So those were the first instances of stigma that I experienced. 

Stigma is that sort of discrimination that the more you become aware of it, the more you notice it. When my mum was explaining that I have diabetes to her friends – their reactions varied, but some would say ‘oh is that because she ate too much sugar?’ or they would say ‘but she’s young and so healthy, so how could she have diabetes?

Impact of stigma

Diabetes stigma began to impact me in a gradual way and then built up over time, which made me recognise that stigma was having an impact on me. With my friends I would defend myself but also worry, ‘am I doing something wrong?’

Stigma makes you question yourself and despite knowing the facts about diabetes, it does make me wonder at times if I did do something wrong. I often talk about external stigma, which usually comes from people I’m not close to or don’t know very well, so I’m more readily able to brush off what they say, because they don’t know me well enough anyway. Stigma does feed into how I feel, but I’m a lot better at ignoring it with people I don’t know well’.

However, with people closer to me like my friends or people who I’ve known for awhile, comments can feed into the internal stigma and how I feel about my diabetes - even if they don’t mean to be judgmental or add to the stigma. I feel as if I’m continually trying to prove what I know to myself, as well as feeling that I have to prove it to other people too. Diabetes stigma is very complex and there’s a lot more to it than how you look and what you eat, its also about how it makes you feel.

Generally, I’m quite a confident person but growing up I did have an anxious predisposition - so constant stigma eventually weighs on my confidence. I’m happy to share information and facts about diabetes, but when it feels I’m only doing that to prove a point to people that their misconceptions are wrong, then it becomes very tiring.

Challenging authority

One aspect of stigma that I experienced with my diabetes journey was at university. One tutor in particular (and this has all been dealt with by the university) would always move the conversation onto talking about my food and carbs, and what things were good or bad for me, whenever I spoke about my diabetes. She would also make comments about losing weight, which having lost a significant amount of weight when I was diagnosed is quite a difficult subject.

Those sorts of conversations felt very uncomfortable and made me realise that some people don’t know a lot about type 1 diabetes and are so entrenched in the stigma and their belief that they know more than you, that they’re not willing to understand your perspective.

The message I got from her was I shouldn’t eat carbs and I needed to lose weight, and it didn’t really matter what I said. I did try to challenge her, but I’m not very confrontational so for me that was difficult. It was a very tricky situation because as much as I wanted to fight the stigma and make my point there was also a power imbalance as she was my tutor, and I was the student – so there was that boundary and knowing how far I could go with ‘calling her out’. And I’m guessing people may struggle with similar situations in the workplace.

I’m happy mainly because of love. I love and I’m loved. I’ve had a very interesting life and done lots of different things, it’s been absolutely wonderful.

I can talk, I can walk, I can sing. I was doing Irish step dancing for 20 years but I stopped because I had a stroke. It’s an appalling burden on you to have diabetes. But I feel I’ve got off nearly scot-free. It’s not easy, you can’t prepare for all the things that happen. 

I’ve been a member of Diabetes UK since 1956. I like the magazine. I read about research and then I do the crossword first.

"But the thing that helps me the most, which I discovered about five years ago, is the forum. It’s full of absolutely brilliant people, who are helpful in ways they don’t even know." 

I wrote in about the difficulty of controlling blood sugar – and very carefully thought-out replies came back immediately – and they’ve got diabetes of different sorts. They give you moral support and the fact they’re willing to give you advice warms your heart. It’s fantastic.

I like to encourage the people on the forum who have just been diagnosed. I say: Well, I’ve had it 60 odd years, and it’s like this and these are the problems. I let them know that you can survive, but you need to pay attention to your diabetes every day.”