When Thomas’ diagnosis happened, the whole family were quite shocked and frightened, but we all worked hard together to learn all about diabetes and how to look after it. It’s safe to say we were a little stunned and apprehensive about the future.

Our local paediatric team were our lifeline – they were so patient and understanding in getting us through the first difficult year and beyond.  Within the first hour or two of my son’s diagnosis, we were armed with an array of training resources – while it was overwhelming with so much to absorb, no question was silly to the nurses or dietician and they didn’t mind explaining things two, three or even four times! In the days that followed, then came the hypos.

Initially they were scary, but as time went by, Thomas learned how to take these occurrences in his stride and worked hard to treat them. This still takes much thought and needs constant conscious effort every day. 

"Overall, he grasped looking after his diabetes really well – he has never complained and has always maintained a positive attitude."

When my husband was diagnosed with type 1 diabetes, the shock and worry naturally returned but if we dare say, we felt better equipped. Right away my husband wanted to make a positive impact on diabetes research and signed up to take part in medical research trials at our local university. 

My mental health does impact my diabetes, especially in my ability to manage it. Despite this, I know I have the right support in place, and I can absolutely notice the signs of when things aren’t quite right, and I need someone to lean on.

I wish people knew that diabetes can feel very much like a 24/7 full-time job without the luxury of holidays, time off or the ability to quit. For me, it can come with highs, lows, shaky legs, irritation, fatigue, vulnerability, anxiety, and the feeling of being quite self-critical. People – both in my education and workplace settings – still expect me to run at full capacity because my condition is invisible to the naked eye.

I find that diabetes is like the theatre. People see what’s on stage – which is me – my smile and my character. They say things like “It must be great to just eat loads of sugar when your blood sugar levels are low” or “At least you can still do everything”. 

But backstage – I feel like not many people care about that. Backstage is where it all happens – it’s me fighting to keep healthy every single day so I can go into the world with a smile on my face. It’s going on stage and holding myself together until this condition makes me unravel again. 

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.

When I was diagnosed, I felt hopeless and completely lost my sense of meaning and drive. Unfortunately, looking back, I felt I didn’t receive the emotional or practical support I needed, both from family and my healthcare team. 

My GP at the time seemed quite judgemental in his view of my diabetes, often comparing me to others who had put their type 2 diabetes into remission. This only deepened my feelings of failure. 

"This lack of empathy I experienced pushed me further away from seeking help. I eventually stopped attending check-ups with both my GP and hospital team – avoiding them out of fear of judgement and not wanting to be reminded of how I felt I’d failed my body and my health."

A real turning point for me was when I moved from London to Norwich and was supported by the team at Norfolk and Norwich University Hospital. 

The consultant and nurses there have always treated me with kindness, respect, and without judgement. For the first time in over 10 years of living in fear and anxiety, I felt empowered to take control of my diabetes. It gave me greater hope for a good and meaningful life. 

After my diagnosis, I tended not to discuss my condition with anyone. 

My wife would raise the subject with me from time to time – and I’d end up shutting her out or ignoring her advice. Only a small handful of people knew I had diabetes – my mum, my brother, and my friend. I didn’t tell my wider family, my friends, or work colleagues. I even kept it a secret from my parents-in-law. 

"I think I initially felt embarrassed and ashamed – principally because I felt that I had let my dad down, and the rest of my family."

I do feel that had I been in a different headspace and ready to engage with my GP, I would have had suitable support and education. 

Although, given our family’s experience, it felt like I had all the education I’d ever have needed in understanding the seriousness and possible long-term implications. I think in many ways, Dad’s illness brought my brother, Mum and I closer together – we are very close to this day.