‘Did you eat a lot of sugar as a child?’
One of the most consistent things in my life is being asked that question; more consistent than my energy levels, more consistent than my moods, and certainly more consistent than my blood sugar. And whilst I, along with all the other kids, ate tiny teddies and roll-ups at school, that is not the reason I became sick.
Unlike type-2 diabetes, which (at the risk of over-simplification) can actually be caused by poor diet, type-1 diabetes it is an autoimmune disease that just develops within your body. Your immune system, for no reason – or perhaps more accurately reasons still unknown – destroys the cells in the pancreas that produce insulin, which is needed to convert glucose into energy. When I was diagnosed at 10 years old, I was told over and over again that diabetes was a ‘manageable condition’. Back then it may have been. I had unwavering parental support and oversight, a regular school routine, and a kind of naivety that – even though I was told explicitly otherwise – if I just kept on doing everything I was told for a while, it would eventually all subside and return to normal.
Of course it did not. Diabetes did, however, become a regular, quotidian aspect of my life: the new normal. This was what the doctors had all emphasised to me – the illness was supposed to just be managed in the background, and eventually I would barely notice it was there. As I became an adolescent, an issue arose, emerging from my intense concentration on being the same as every other teenager; I moved from being complacent with my management, to almost within a state of denial. The reasons behind my increasing mismanagement were essentially twofold: I was experiencing what has been described as ‘burnout’, due to the relentless and sometimes unpredictable nature of diabetes, as well as becoming resentful and embarrassed about the illness. I stopped testing my glucose levels; I hardly wore my insulin pump – my illness, for a variety of reasons, became a secret burden that carried with it unwarranted amounts of shame and guilt. It was mostly internalised. People had generally never said anything towards diabetes that merited the painstaking attempts I went to in order to conceal it. In fact, no one really seemed to think twice about it. However it was the small things – overhearing a conversation about how ‘gross’ it was to have to prick your fingers for blood, or the few uncomfortable reactions I would receive when telling someone I was a diabetic – that insidiously snaked through my thoughts and dictated how I managed my condition.
From 10 years old I was taught to count carbohydrates, how to decrease insulin levels if I exercised or increase them if I had the flu, but I was never really taught how being a diabetic would essentially govern my energy levels and my mental health. Those that know me personally would know I can almost never get through the day without sleeping – I constantly feel fatigued, even after having slept for 10 or so hours at night. I have learned to be selective and realistic about the things I am able to achieve in a day – going to all my classes, studying, and doing some form of exercise may be ambitious on some days. Learning about ‘spoons theory’ – constructed by Christine Miserandino – has really helped me understand this process and feel less frustrated and guilty that I often just cannot seem to keep up with my peers.
The correlation between diabetes and mental health is incredibly strong; being a type-1 diabetic more than doubles your risk of depression, and the risk of developing anxiety is also far higher. The consistent preoccupation with carbohydrate intake, categorisation of ‘good’ and ‘bad’ foods, and a sense of a lack of control over your health also nurtures an unhealthy relationship with food that provides the foundations for disordered eating all too easily. Poor mental health will impact your ability to manage diabetes, subsequently worsening its effects, leading to fatigue and frustration, and inevitably coming back to mental health again. The impact is a self-perpetuating cycle that can be incredibly challenging to break out of – especially when, as a university student, you are so preoccupied with assessments and maintaining some spectre of a social life that you may not realise how much you are struggling.
What really helps is when the people around you acknowledge sometimes additional help and support is necessary – it isn’t about gaining an advantage, but attempting to level the playing field. Awareness about managing type-1 diabetes – beyond just having to ‘eat some sugar’ – is paramount to shifting misconceptions about the condition and hopefully leading to internal acceptance for the people living with it. It can be tiring to have to constantly explain how the illness works and the severity of its implications. Some of the responsibility should be shifted onto others, so they can seek as a community to understand the illness of those around them, and offer support and reassurance.
Diabetes is not, and never will be, the worst illness out there. Yet it is debilitating and vastly misunderstood. A cure may or may not come about in my lifetime – but in the meantime, a greater appreciation of what it takes to live with diabetes might make managing it a little bit sweeter.