Amelia's story: Raising awareness of the impact of stigma

In December 2022, whilst studying at university, I was diagnosed with type 1 diabetes at age 18.

A couple of months prior to my diagnosis, I experienced a few symptoms and I remember being out for a meal with my flatmates and just feeling very unwell. I was nauseous, had no energy and just feeling very tired. My symptoms continued for well over a week, so I went home to my parents.

At home the out-of-hours advice line said that it was probably dehydration and exhaustion, but I was getting worse, so my mum booked an emergency doctors appointment. As soon as I went in, the doctor wanted to check my blood sugar levels which were too high for the meter to read, so he got me to do the ketone urine test and that was really high too, so I was sent off to the hospital and later that day I was diagnosed with type 1 diabetes.

My diagnosis was a massive shock. I had no idea it would be something as serious as diabetes, and I don’t really remember much during the four days I spent in hospital. Whilst in hospital I was given some information, but I also went onto Instagram to find others with the same diagnosis to see how they were dealing with it, which was really useful and by the time I left hospital I had created my own Instagram account so that I could follow them and also share my own experiences of living with type 1 diabetes.

I’ve found writing and sharing things online to be a good outlet for me to process things.

I returned home initially for the first five weeks and then went back to university. My friends were super supportive, which was lovely, and coincidently there was another girl in the orchestra with me who was also type 1 so we spent a bit of time together, and having her there was a great support in helping me to understand my diabetes.

For the first few months, the university was great. They put my student support programme in place, and I was able to get adjustments and extensions on deadlines and exams.

A few months on from my diagnosis, I found out about the Diabetes UK Youth programme Together Type 1 and within that you have Young Leaders and so I joined the group and that’s been an ongoing support network for me. We’re all aged between 16-25 and living with type 1 diabetes.

I joined mostly to help other people going through a diagnosis experience like me, and also to hopefully meet other people who understood what I was experiencing. It was important for me to learn all I could about diabetes, in particular type 1, so I could feel more secure and confident about my condition.

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 wish people knew about the mental burden of living with type 1 diabetes. People assume that you check your blood sugars now and then, and you inject insulin a couple of times a day and apart from that you’re fine.

But type 1 diabetes isn’t like that; it’s 24/7 and I’m constantly checking my blood sugars, and assessing, ‘can I go for that walk’ or ‘can I eat something’, or ‘how much insulin do I need now if I’m going to do some exercise later’ - it’s relentless. And because I may be reluctant to make a fuss, people just don’t understand the never-endingless of it.

What would help is if people listened more to people with type 1 diabetes and have that openness to understand, and not assume they know what it is and what we can or can’t do. Just take a step back and listen to the people who are living with diabetes on a daily basis and take their word for it, as we know what we’re living with.

Just because they may have read something about the condition or watched a few TikTok videos doesn’t mean they know how we’re feeling. Let us be the ones who decide how we deal with our diabetes.