One minute you’re watching a film with your friends, eating a large Dominos to yourself and drinking what feels like your fifth gallon of Coca Cola, and the next you’re hooked up to an IV in between crackly hospital sheets with a doctor telling you you’ve got to stab yourself with a needle every single day for the rest of your life. Yesterday you were you. Tired, thirsty, thin, but still you. Who are you now but a patient? Who are you going to be in the future? What sort of future have you even got?
A few years later, you’re knackered with it all, can’t take any more of the relentless weight of responsibility, and a brusque nurse scowls and tells your mother that what you’re going through is just teenage angst. It’s typical adolescent rebellion.
Teenage angst? Is that what we call the frustration we feel at having to repeatedly count every single carbohydrate on every single plate, in every packet, in every cold glass of rosé on a Friday evening? If we give ourselves just one little moment’s break from testing sugars, or changing injection sites, or calculating the carbs in a slice of Victoria sponge on your mum’s birthday, are we then criminals, raging against our duties as diabetes patients to dose up our insulin perfectly and get shining Hba1c results?
Unfortunately, to some (very few, fortunately) medical professionals, you might have felt you were a file full of medical notes, just one of the many cases they have to get through in the day. It’s happened to me on two occasions during my childhood before I was old enough to attend young adults’ clinic and be treated like an actual individual. I’m lucky to have a fantastic team now who can never do enough to help me, whether that’s arranging an extra meeting to smoothe out a few problems, or just checking up on me via email when needed, but not all the staff you encounter might have been so helpful. There are some who will learn about diabetes from a textbook and fail to understand that we are more than just a broken pancreas, or a scattering of blood glucose readings on a chart. There are those who seem to have forgotten that we’re human.
One particular nurse once invited me to an ‘important appointment’. I’d already been to diabetic clinic a few weeks’ before, so I had to take another morning off school to go, which stressed me out enough when my GCSEs were just weeks away. Mam said it was important. The letter said it was important. What if they’d found something terrible in my test results? Was it my kidneys? Were my blood sugars that bad after all? I said nothing in the car on the way there.
Half an hour later, I found myself in the ‘Education Room’ of the diabetes unit, perched on a chair which formed part of a circle of teenagers and their parents. The nurse, plump as a hen and smiling grimly, sat in the middle.
She introduced one of the girls. I can’t remember her name, or what she looked like, only that she had an excellent Hba1c result and near-perfect blood glucose control. The nurse deemed her a ‘good diabetic’ and she smiled. I decided I didn’t like her. And then the nurse turned to me, smiling slyly.
‘And this is Natalie. Natalie is an example of those of us with poor control. Those of us like Natalie can learn today from others here whose results are good.’ And then she announced my Hba1c results to the whole room.
I sat in the chair a moment, reeling, as all eyes swung towards me. They were judging me. Judging me for something I never asked for. I swore just about audibly and stormed out of the room, sobbing and burning with embarrassment and rage all the way down the corridor, down the stairs and out of the building. I stayed howling in the car park until Mam managed to catch up with me.
Did that woman embarrass me in front of all those people? Did she brand me bad at something I never even asked for? I hadn’t ever wanted the responsibility of type 1 diabetes in the first place. I never asked to learn how to be a pro at injecting myself, or trying to chase that fine balance between high blood sugars and low blood sugars, and I already had enough on my plate to deal with: diabetes doesn’t stop or get easier just because you’re about to sit your GCSEs, or you’re getting bullied at school, or because you’re moving out of the family home and you’re all of a sudden packing your life into boxes. You still have all this, plus a non-functional pancreas on top of it. I wanted out of diabetes. I wanted it gone, and I knew I couldn’t ever get rid of it, so I could do nothing but wail in the car, sobbing into my palms and knowing from the familiar raspy thirst at the back of my throat, that there was never going to be a single day, minute, or even second’s respite from it.
Do you find yourself relating to that helpless anger? Have you also experienced judgement from either a medical professional who judges you purely on your numbers or perhaps a colleague who sees you trembling with a packet of sweets in your clammy hands and sneers that you’re ‘not the best diabetic, are you’? Unfortunately, we do encounter people like this, and sometimes those people should be the ones looking out for us. These should be the people who see us as human beings, not diagrams in medical textbooks or sensationalist stories on TV.
On reflection, this woman was hardly ‘professional’ and I’m glad I never encountered her or any other nurse like her again. I knew she was in the wrong when my mother didn’t even bother to tell me off for telling the nurse to eff off.
You’re not ‘rebelling’ for feeling angry. You’ve got every right to feel angry, or sad, or confused, or frustrated. You are not weak, stupid, incompetent, childish or stubborn for feeling the things you feel when you’re dealing with this every day. If you’ve ever launched your blood glucose tester across the room in fury and watched the battery ping out of it as it hits the wall, that’s okay, I’ve been there too. If you’ve ever scattered your needles on the kitchen floor in a rage, or punched the little violet-shaped bruises on your leg in fury, or slipped your diabetic clinic appointment letter into the recycling before Mam and Dad see – yep, been there and done that too.
Put it this way. Imagine if we had to work 24-hour shifts, 7 days a week, 365 days a year without a single day off. No time off for Bank Holidays, or Easter, or Christmas. No leeway if we’re sick and perhaps coping with a stomach bug or the flu. In fact, sickness makes the hard work all the more difficult. You can’t ever hand your notice in either. You have no choice but to work forever without a break. How would you feel? Exhausted? Tearful? Angry? Depressed? Helpless? I clearly remember being in my student bedroom at university and breaking down at my desk, tossing my new and useless antidepressants into the bin, and then throwing in a howling tantrum for good measure.
The funny thing is, some people who know me would describe me as ‘calm and fairly reserved’. But back then, behind closed doors, it was like pulling a mask off.
And while I can’t tell you that I’ll take diabetes away for you, I can tell you that you can make things better for yourself, slowly. It takes time, patience, acceptance and above all the ability to stop being so bloody hard on yourself. You aren’t a failure for wishing you could quit, and you are worth so much more than the numbers on your blood glucose meter.
You’ll feel all sorts of emotions as you go through life, but with diabetes, your blood sugars can sometimes have the biggest impact on your mood (and this is all the time, not just during the diagnosis stage). You may find yourself feeling the following:
Probably the predominant feeling. Of course you’re pissed off. The weight of responsibility that diabetes carries with it, on top of the pressure of everyday life, mean that you may feel angry more than anything else. Also, how often have you got shaky, sweaty, confused and flustered during a hypo only to lash out unintentionally? How often has a high reading and the inevitable raging thirst and utter exhaustion left you furious with absolutely nobody understanding why you’re acting like a cross between The Grinch and Medusa? Of course you’re angry. Allow yourself to be angry. Punch pillows, cry, scream, then breathe. It’s okay. Everyone will have experienced ‘diabetes burnout’ at some point.
Things can feel a bit overwhelming, can’t they? I usually find that I get most sad and anxious around the time I know a diabetic clinic appointment is coming up and I’ll have to give blood (more on needlephobia in another post), or another appointment letter falls through the letterbox asking me to attend an ophthalmology clinic or after my blood sugars have been running high for a while and I’m just generally a bit more weepy and exhausted. This is most common with those who were diagnosed at a later age, and suddenly they may find themselves yearning for the times when they didn’t have to worry about carb-counting their lattes or trying to discreetly test their blood sugars at the edge of a nightclub dancefloor in the dark. Sometimes it’s the isolation that diabetes can bring. Again, it’s totally okay to feel sad. Don’t guilt yourself into thinking: Well there are others who have it far worse!
Your feelings are valid. Don’t try and repress them. You’re human, and you need to give yourself the permission to feel.
‘Did I take enough insulin for that?’
‘Have I packed my glucose?’
‘Have I even taken my long-acting insulin at all today?’
‘Argh! Insulin pump out of batteries!’
‘Ugh…it can’t be injection time again…’
‘My HbA1c results are rubbish…I’m just going to end up with bad kidneys aren’t I?’
Any of the above sound familiar? Diabetes is a constant worry. There are so many things to consider all the time, it’s a wonder there’s any room in our brains for anything else at all.
My biggest scares so far have included losing a suitcase full of insulin on a trip abroad, accidentally giving myself eight times my normal amount of insulin by mixing up my long-acting and short-acting doses (don’t try to work out an A level Chemistry equation at the same time as injecting), ending up in hospital with a nasty bout of flu which made my blood sugars go off the meter, and losing all feeling in my legs (and weirdly, my tongue) during a particularly nasty nighttime hypo on a trip away one night which had me sliding whole sachets of sugar into my mouth in a desperate attempt not to pass out.
Diabetes is big, and it’s scary. It’ll keep you on your toes at all times. But remember, for every scary moment there’s a lesson you’ll learn to prevent it happening again. For example, I started noting down on my phone whenever my background insulin had been injected to make sure I never did it twice. I started setting alarms so that I wouldn’t forget it altogether. And I now carry batteries with me at all times in the event that I’m on a night out and suddenly find myself in dire need of a AA Energiser battery while my insulin pump starts playing its weird Fur Elise low-battery warning tune in the middle of Thriller.
Er…what? What part of stabbing myself for a packet of Walker’s crisps is supposed to make me feel ‘powerful’?
Let me give you an example of one time diabetes enabled me to feel more ‘powerful’. On 28th May 2018 I did what I never, ever imagined I’d be able to do as a type 1 diabetic: I completed the Edinburgh Marathon. Not a half marathon. The full, gruelling, mentally and physically draining 26.2 miles of running.
A marathon is a huge achievement for anybody regardless of whether they have type 1 diabetes or not. As someone who forever failed at PE and was last to be picked for sports teams, a 4:15 finish for a first marathon would have felt incredible to me anyway, but to have completed that through the challenges of four separate hypoglycaemic attacks around the course (shoutout to the kids at the roadside who brought me jelly babies), a heavy insulin pump pulling my shorts down and stopping on the side of the road to test my blood sugars every hour, crossing that finish line felt phenomenal. I was in control, and diabetes couldn’t stand in my way (advice: if your pump is likely to pull your shorts down when out on a run, do not wear Sesame Street underwear).
I’d never felt more me. I was so much more than my highs and lows.
I’m not saying you have to go and run a marathon to be able to achieve this feeling. That was just my personal goal. I’d put in the hard work, made some mistakes along the way in training which I suffered for later, but despite the challenges I’d learned lessons and not given up. Make a list of the things you’ve always wanted to achieve. A particular job you’ve always wanted to do? Join a sports team? Write a book? Travel? Do your research, make a plan, get prepared and go for it.
It doesn’t even have to be anything this big: little wins every day all add up. Something as simple as managing to bolus your insulin correctly for a pizza and ice cream (far harder than it sounds), returning to something you once enjoyed before diabetes or just having a totally normal day out with your friends are all going to make you feel far better than shutting yourself off and beating yourself up (and if that stuffed-crust pepperoni causes a blood sugar spike, there’s always correction doses to save the day). Whatever you want to do, don’t let ‘I can’t, I’ve got diabetes’ so much as cross your mind.
You may have more to consider with diabetes, and you may find yourself up against more challenges than if you didn’t have diabetes at all, but trust me, with a bit of work and faith in yourself you can do it. Reach out for support, talk, prepare, plan, and do what makes you you. Your diabetes nurses are there to help you. Charities and peers are there to help you too (check out the Type 1 International’s snail mail scheme and the Diabetes UK support groups, forums and events) You’re human, your feelings are valid, but you don’t need to be a superhero to go for the things in life that you want. After all, you deserve it.
Natalie Ann Holborow