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The hidden struggles of living with type 1 diabetes 

ByFreddie Clemo

Mar 17, 2023

Globally, 1 in 7 people live with a disability, 80% of which are invisible, according to the Hidden Disabilities Sunflower Scheme. Type 1 diabetes is one such disability that over 9 million people live with. The Student spoke to Valentina Giai, a Masters student at The University of Edinburgh, who wants to bring more awareness to what life is like with type 1 diabetes.  

Diagnosed at age 6, Valentina opened up about how diabetes has affected her life, and the misconceptions surrounding hidden disabilities. She said: ‘You have to give up a lot of yourself just to take care of the condition, and there is never a break even if you get burned out. Once you get diagnosed, nothing is the same.’

Growing up, the lack of media representation made Valentina feel like a ‘separate category in society’: she felt that even if disabilities were shown in the media, they were often negatively represented, and ‘invisible disabilities were never shown’. She said: ‘When I was younger, I knew I was different, and I never saw anyone who had the same condition as I did. Because of this, I felt like I was very unseen. When I got my insulin pump, and there was something visible to show that I had diabetes, I just wanted to show it to everyone. It felt like it made my disability more deserving of attention because it was more visible. The 2022 film Purple Hearts was actually the first time I saw someone with an insulin pump on TV. When I was younger, I would find it hard to talk about [diabetes], but now I like talking about it, because it is so important to talk about.’ 

As a student, Valentina spoke about the assumptions that other students can make, because her disability is often not visible. She uses Instagram and TikTok to bring awareness to what it means to have type 1 diabetes, making videos of how much goes into the daily maintenance of her condition, and calling out people’s assumptions and misconceptions. She said: ‘I wanted to share how diabetes is for me, because the representation is something that I really wanted when I was younger. Reality is very different for someone who has a chronic disease, to those who do not, and many people do not know this. Many of my friends have no idea what it actually means day-to-day to have diabetes. My whole day revolves around thinking about my blood sugar, as I want the HbA1C average to be perfect. People make assumptions that it is easy, or that the insulin pump does all the work, but I have to wake up at 2am to measure my blood sugar every night. With invisible disabilities people often assume that if you look healthy it is surely not that bad, and you shouldn’t deserve special treatment, or that because you look fine, it is easy to manage your condition. In reality, it takes up so much of my time and energy.’

When parts of her condition are visible, Valentina spoke about the negative experiences she has had, and why she wants more representation and widespread understanding of diabetes: ‘The more I talk about [diabetes], the more I realise people don’t actually know what [it] is, or that it is a disability. I noticeably see people staring at my infusion sight and my insulin pump on my stomach when I am wearing clothes that make it visible. I would rather that people just asked what it was, as when they stare it makes me feel uncomfortable and makes it feel like they think I am out of place.’  

Valentina told The Student that she encounters people at university who offer unsolicited advice on how she should manage her disability, and she wanted to draw attention to how damaging this can be. She said: ‘People sometimes think they know more than they do when it comes to hidden disabilities, and the ones making comments are often the ones who don’t have any health condition whatsoever and don’t know what diabetes is. It is insensitive to give people advice on how to ‘treat’ their own condition, assuming that you know better than them. People will also say “surely it’s not that difficult to have diabetes”- these comments catch me unexpectedly, and I don’t know how to respond, and sometimes I feel like even if I explain how much it takes to manage the condition, it will not make a difference to how they view me.’ She added that ‘letting comments slide’ was often the only way she could deal with them. She is using her Instagram posts to draw awareness to how detrimental unsolicited advice can be.  

As a postgraduate regenerative medicine student, Valentina also spoke about how diabetes affects her day-to-day life in the lab: ‘Sometimes it’s difficult to ask for help when I am in the lab. I find myself not wanting to stop the experiment, but if my blood sugar is high or low, I must take care of myself first. It is sometimes difficult when the other people in the MSc programme make wrong assumptions about why I am coming in late or leaving early, because most of the time it’s because I have to go to the pharmacy to pick up my prescriptions, call to get supplies, or I haven’t slept at all because of my blood sugar fluctuations. I often want to hide my struggles and just get on with the day.’ She went on to say: ‘Diabetes is the main reason why I am in science; I feel like I have a clear purpose – who else would be better for finding the cure to diabetes than someone who knows what it is like to have it? Diabetes is a big motivator for me being a woman in STEM.’  

Valentina highlighted the way that mental health support is overlooked within the University’s disability services. Now in her 5th year of studying at the University of Edinburgh, she said: ‘There hasn’t been any specific mental health support for people who have chronic illnesses. I think this should be completely separate from the general support. With diabetes in particular, it is very common to have disordered eating (around 30% of diabetics develop it), as you have to count everything you eat. I think there should be a specific mental health department to support students with disabilities and chronic illnesses, with professionals who have experience in this field. It is so difficult to get seen by the NHS diabetes specific mental health and psychiatric teams.’

Finally, Valentina spoke about the responsibilities that come with having type 1 diabetes: ‘I cannot take a break, and then go back to worrying about my blood sugar. You just have to keep going without stopping from the day you are diagnosed, and even with support from other people, you are the only one who can truly take care of it.’

Image Courtesy of Valentina Giai