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Complexity and distress: the mental load of living with Type 1 Diabetes

Photo by Towfiqu barbhuiya on Unsplash

Around 340,000 people in the UK live with Type 1 Diabetes. It is relatively rare in comparison to Type 2, and it is incurable. It is also an immense challenge to live with and it never, ever quits.

I am a researcher in academic and cultural knowledge exchange and I was diagnosed with Type 1 Diabetes (T1D) 30 years ago, when I was 10, and this blog is about my experience of living with T1D.

Research suggests there are genetic pre-dispositions to T1D, which can be provoked by a virus/infection or stress. It arises when the immune system attacks the insulin-producing cells in the pancreas. Insulin is a hormone which regulates the amount of glucose, or sugar, in the blood. Too much sugar in the blood over time can lead to multiple complications, such as kidney failure, nerve damage, blindness, liver disease, limb amputation and heart disease (to name just a few). Too little sugar in the blood leads to a complete shutdown of the body and ultimately, if untreated, death. In T1D, glucose cannot be properly regulated. It is life-limiting, typically taking 10 years off the life of anyone living with the condition.

I was diagnosed with T1D on a family holiday in the summer 1993 after developing symptoms of Diabetic Ketoacidosis (DKA) – a life-threatening condition caused when there is severe lack of insulin in the body. I was rushed to hospital where I stayed for around a week and was given rudimentary instructions on how to inject insulin, how to test my blood sugars and what to do if they dropped too low into hypoglycaemia. This is quite a common event for most T1Ds, and it can involve feeling shaky, sweaty, hungry, confused and incredibly grouchy. For me, if my levels go really low, I lose my sight and memory. Then, I went back to primary school as ‘the diabetic’, my life dominated by routine and control.

I’ve been told on countless occasions that I took the diagnosis in my stride, but the reality is that I found being able to control it was the easiest way to pretend that it wasn’t a problem. That I wasn’t ‘different’ or disabled, although T1D is classed as an ‘unseen disability’ under The Equality Act 2010. I rarely told anyone about my condition, and even moved to Mexico aged 18 and travelled around central America with a cool bag full of insulin attached to my backpack.

Everything that enters my mouth has to be balanced out by a dose of insulin. But blood sugars are not only influenced by what you eat and how much insulin you’ve injected, but also by exercise, stress, caffeine, adrenaline, alcohol, illness, insulin resistance, how much sleep you’ve had and (there’s an additional load for women) the time of your cycle. Blood sugars are a moving target, and being able to control them perfectly requires an incredibly detailed understanding, not only of the condition, but also nutrition, biology, how to mentally calculate ratios, and of the very particular way your own body responds to life in general.

Diabetes Distress

It is estimated that Type 1 Diabetics have to make around 180 additional health-related decisions every day. So during my 30 years as a T1D, that’s nearly 2 million extra decisions. We are twice as likely to suffer from depression as those who do not have the condition, and we can also suffer from ‘Diabetes Distress’; anxiety, frustration, worry and even panic about future health. I have suffered from Diabetes Distress on two separate occasions, and it was crippling.

One of those times was after I became pregnant at 33, and the full strain of living with the condition became unavoidable. In pregnancy the diabetic body behaves completely differently, and it changes from month to month – so everything I had learnt in 24 years became obsolete. If T1D is not well controlled during pregnancy the risks to the baby can be catastrophic. So I became obsessed with control; I measured every gram of carbohydrate that entered my body, did blood tests and injected around 15 times a day. Fortunately, with some excellent support from my healthcare team, my daughter was born healthy and only 3 weeks early.

In 30 years of living with T1D I have seen enormous advances in the tech available to help manage it. Newly diagnosed children can now get a ‘closed loop system’ on the NHS, which has been hailed by Professor Partha Kar, NHS England’s Clinical Director for Diabetes, as the closest thing yet to a cure. I now wear a continual glucose monitor which sends my blood glucose readings to my phone in real time. Yet, I have never received any mental health support to help me manage the condition. I believe every T1D, and especially the newly diagnosed, should be offered professional psychological support. Although diabetes care in the UK is the best in the world, and free NHS prescriptions of insulin have kept me alive for 30 years, there is a huge gap in mental wellness provision for T1D in the UK. Psychological Wellness Practitioners can be made available to those who ask, but what do you think living with an incurable, life-threatening condition does to your sense of self-sufficiency and resilience?

The Mind-Body Connection

This is how I feel about my body: it’s trying to kill me. Day in, day out, hour upon hour, I am constantly at war with it. T1D means having 24/7 awareness of your body and its processes, constantly monitoring its behaviour and trying to control it. Some days that doesn’t take much, just adhering to a concrete routine (a mental drain in itself), but some days, the struggle is overwhelming and infuriating. Bearing this additional mental load and level of complexity doesn’t necessarily become exponentially worse or better as time progresses, it just never goes away. There will be no cure in my lifetime and the weight of that has to be borne alone.

Awareness is perhaps where we need to go next, which is why I’m writing this blog on World Diabetes Day. If you know a Type 1 Diabetic, please take a moment to consider the amount of extra effort they have to constantly put into staying alive; how every meal out involves mentally calculating the carbs in each course before they’ve even seen it; how every walk, run, or stressful event involves a very complicated assessment of insulin vs food vs calories expended vs cortisol effect. How every episode of hypoglycaemia can be potentially life-threatening, especially if it happens whilst they’re driving. T1D needs to be recognised as a condition that requires both medical and psychological support. And all Type 1 Diabetics need to be celebrated as the warriors that they are.


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