The hidden daily struggles: living with type 1 diabetes


Emily Warner discusses the invisible challenges faced daily by those living with type 1 diabetes

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Image by Artem Podrez

By Emily Warner

I have been accused, by almost everyone in my life, of being indecisive. I will be the first to willingly admit this fact; the Netflix home page is a nightmare of potential options, choosing a restaurant is approached with the caution of a life-or-death decision and the worst moment of my year is when the optional modules list for next year is released. However, I recently concluded that I am not actually indecisive, but simply fatigued by decision-making. Having had type one diabetes since the age of five means that every moment of my day is a decision; from what to eat, how much insulin I should give myself, when to sleep, when to exercise and what to carry with me. It is a 24-hour job and making a
mistake could be fatal. You can quickly see why mundane, everyday decisions become an effort. You can see why it’s sometimes nice if someone else chooses where we eat.

Having diabetes is not a recent event in my life. In fact, this April I will reach my 15- year anniversary of being diagnosed (my ‘diaversary’ if you will, a horrible phrase coined by diabetic Instagram influencers who post about their fabulous blood sugar control). If there is one thing I have learnt during this time, it’s that there is nothing predictable about the disease. The constant need for decision-making is a testament to the body’s continual state of change, which can make some of the everyday tasks you
take for granted much more difficult. The other challenge is the fact that diabetes is an invisible disability; on the outside, it’s easy to look ‘normal’ (not that there is such a thing), to look like you’re coping, to assume that it’s not so bad after all. I like to call this the ‘duck effect’; on the outside, I might seem to nonchalantly glide my way through life, all the while frantically paddling underneath (in the form of many tearful phone calls with my doctor). Hopefully, this article can enlighten you to some of the hidden struggles of the everyday.

Picture this. It’s a sunny day, you’ve been stuck in lectures all morning and you think to yourself ‘I might go on a walk’. Then, you just go. Ok, maybe you put your shoes on first, and then maybe it starts
raining because we do live in England and you decide to grab a coat but, the point is, the only major decision is whether to walk out of your front door or not. When I look out the window and think ‘I might go on a walk’, a chain reaction of questions descend, worse than my mother when I come home late from a night out. “Do I need to eat something to prevent my sugar from dropping?”, “Do I need to reduce my basal insulin rate?”, “How much sugar should I carry with me?”, “Is my phone charged in case I need to call for help while I am out?”, “What is my insulin on board?”; some of these questions you won’t understand and that’s exactly my point. You don’t need to. Eventually the question arises, ‘“is it really worth the effort of going on a walk?” and often the answer is a resounding no. On the rare occasions when I do decide to walk, half an hour later I usually wind up on a bench with a low blood sugar, feeling tired, shaky and dizzy.

It’s easy to romanticise sitting on a bench, watching the world pass by, but trust me, there is nothing glamorous about doing this while downing a litre of orange juice and trying not to pass out. Or, even worse, groping my way along the shelves of Tesco looking for something sugary because I didn’t
bring enough juice with me from home. If you think this sounds bad, imagine what a debacle D of E
was when I decided to do that. Seventy-five percent of my rucksack was crammed full of snacks and I had to pretend not to notice the rest of my group roll their eyes when we had to stop every ten minutes for me to check my blood sugar. Not even I wanted to be in the same group as me.

Now let’s turn to an even simpler activity: sleeping. For this, you might need some background information. The pancreas constantly gives us a supply of insulin which is just enough to keep our blood sugar levels balanced, but this amount changes throughout the day and depending on the person. Someone with diabetes has to figure out their own basal rate and if we get it wrong then it’s goodbye to a restful night of sleep and hello to hourly alarms (sorry to my flatmates). You can imagine the frustration of this when trying to sleep early in anticipation of a 9 am lecture, only to be awake
half an hour later taking sugar or adjusting my insulin.

That inconvenience is incomparable, however, to my run-in with campus security last year. It was
a normal night and I was sleeping soundly (or as soundly as possible in my prison-esque James College bed), when my blood sugar dropped; I woke up, drank some orange juice and waited for it to come up again. I wish my story ended there. Instead, I made a fatal mistake; I called my mother. She requested that I phone her back when my blood sugar returned to the normal range; “ Yeah, yeah, yeah”, I replied groggily, already falling asleep again (it was 4am, okay!). Spoiler alert, I did not call her back. So, fast forward a few minutes, I had security knocking on my door asking for ‘Laura’ (my surname is Warner and clearly something got lost in translation) and preparing themselves to perform CPR. Once again, sorry to my flatmates for yet another late-night disturbance.

This list would not be complete without mentioning travel. Airport security isn’t an enjoyable experience for most. The frantic ten seconds of unpacking laptops and liquids while trying not to let all your underwear spill out is a stress-inducing endeavour. Then you have to sidle through a metal detector, schooling your face into neutrality and trying not to look guilty, before another mad rush to shove everything back into your bag; all that careful packing of the week before in disarray. Imagine doing this with needles, insulin, and an insulin pump that cannot pass through a metal detector. Not looking
guilty suddenly becomes a lot harder. For me, airport security inevitably brings an awkward explanation (often to someone who doesn’t speak English), a full-body search and some suspicious glances from fellow passengers. Once, I found myself on my hands and knees, crawling beneath the security barrier to avoid the metal detector – there was, they told me, no other way through. Furthermore, for a period of time I kept my insulin pump in my bra, and you can imagine the painfully awkward rummage to find that when the staff asked to see it. I promise, I’m not about to whip a bomb out from between my boobs! Although that could generate some pretty funny newspaper headlines...

The challenge doesn’t end when I reach my destination. My first plan of action in a new country is to find sugar; in particular, glucose tablets (to prevent my blood sugar levels dropping).  Apparently though, these don’t exist in Barcelona where I spent my summer doing a teaching course. On one particularly desperate day, I trailed around seven pharmacies in search of glucose tablets, pathetically asking for “glucosa?” in every one. I even enlisted the help of my new friends, who I had met on the same teaching course, which led to a hilarious encounter involving recommendations to look in nutrition shops and bike stores in order to find something that I need to stay alive.

As comical as these scenarios might seem retrospectively, in the moment they can be scary and uncomfortable. They require decisiveness that often goes unseen. Sometimes, my life feels like a catalogue of numbers, and my future is defined by what those numbers are. It can be isolating too; nobody around me is qualified to make these choices, nobody can share the responsibility and nobody realises how difficult it is most of the time. I could easily be consumed by this, but that is a choice too; a choice between feeling bitter, despondent and hopeless, or accepting it and continuing to find ways to live and enjoy living. I wake up every morning and choose to feel grateful for who I am, a person who has been shaped by her illness and enriched by the struggles she’s faced. I am not defined by my diabetes but it is an integral part of me. Choosing happiness despite it, is a decision I don’t find hard to make.