What is it like to live with type 1 diabetes?

By the time I sit down at my desk ready to start my 9-5 I have already started another job that morning. From the moment that I wake, I make management decisions that will impact how I feel throughout the day.

I will have decided what I will have for breakfast, and have weighed out the amount of porridge and dosed for carbohydrate, protein, fibre, and fat in any given meal. I will have considered if my morning coffee requires an insulin injection and I will also have decided if a pre-bolus is worth it given my current blood sugar.

I may have had to change my pump site or blood glucose monitor. I may have had high blood sugar all night and feel sugar-hungover, or gone low a few times - this was common before I started on the closed-loop system, where my insulin pump and glucose monitor talk to each other. It is amazing how I can sleep through now and there is a safety barrier keeping me safe.

In the middle of a morning meeting, I might hear the glucose alarm and see that today, unlike yesterday or a different day, I have had a different blood sugar reaction to the same amount of insulin that I have dosed for the same breakfast.

Managing a complex condition 

Type one diabetes is not as simple as injecting insulin for the food I eat. There is a complex blood sugar reaction that is impacted by over forty variables, such as stress, exercise, illness, and hormones. I can go for a run and experience a huge blood sugar spike immediately after.

There’s power in not constantly questioning why our blood sugar has reacted in a certain way, often, we just don’t know. When my blood sugar is not cooperating, I ask myself three questions:

• Have I moved today?
• Have I eaten well?
• Have I been thankful?

Gratitude is amazingly grounding and gives me perspective in the moment of a frustrating high or low blood sugar, that this too shall pass and that I am safe. If I’ve done these three things, there’s not a lot more I can do.

The mental health impact

It’s hard to express to non-diabetics the job that living with type one diabetes is. In a very real sense, I have kept myself alive since diagnosis over six years ago when, aged 17, I was diagnosed with type one diabetes.

I’ve taken my diabetes on holiday, to night clubs, on a half-marathon, to work, around Europe whilst interrailing, to exams, to festivals, on a trip around southeast Asia, and to my graduation, amongst other exciting and ordinary life events. How lucky my diabetes is!

Looking at me however, you wouldn’t have a clue as to the extent of the management of this minute-by-minute chronic illness - the headspace that the internal dialogue of managing this disease requires, as is the way with most people living with chronic conditions.

I look back on the past six years and realise now how much diabetes, alongside its physical symptoms of high and low blood sugars, has affected my mood. It’s not the 16,000+ injections that bothers me, it’s how many social situations high blood sugar has taken me out of the moment, and how irritable and angry it can make me.

My blood sugar can come back into range and suddenly, I feel like myself again, and all the negative thoughts I experienced when I had high blood sugar seem powerless now. There hasn’t been a single waking minute off of managing type one, but I stay hopeful in the progress of science, research and a cure.

I grieve for my life before diabetes but accept the job at hand. There’s so much that diabetes has taken from me, but at the same time, it has given me so much. It’s what we do with our health that matters.

Living with type one has taken me to some dark places. At the end of summer 2022, I thought that I was dying on a beach in Greece. As a result, during the past eighteen months and my last year of university, I had daily experiences of reliving this trauma. I lost the language to communicate what was happening within the landscape of my body and mind.

I lived under a crushing feeling of fear for my future and felt this fear as a knot in my chest, making it hard to breathe. When I started to dissociate I self-referred to talking therapies and was lucky to quickly receive NHS health anxiety therapy. I am grateful to my amazing therapist who gave me the tools to recognise the lunacy of the health anxiety thought cycle.

I meditate regularly to find perspective and practice yoga to ground myself in the experience of my body. I’m grateful that diabetes has felt this heavy because it’s a joy to find evolving mindsets around living with it. It’s a joy for it to feel lighter.

Learning from the condition 

A diagnosis of type one diabetes instantly puts you at increased risk for a lot of complications as blood sugar impacts every cell in your body. I choose to manage my diabetes responsibly but what I have struggled with is tapping into self-compassion, to quiet the inner critic that says that I will never do this job well enough. I’m learning it’s a powerful antidote to the 24/7 management pressure.

Often, I feel as though I am a walking pancreas, trying to replicate the miracle that is a working one. I struggle with how much diabetes impacts my daily life and at times I’ve lost myself in managing this condition. The language we use around type one diabetes is important. It’s easy to feel as though this condition is self-limiting because of what we’ve been told. I’ve felt that fear for my immediate and long-term health, but we have to let go of the constraints we place upon ourselves in managing diabetes.

We’re someone outside of this condition, even though it impacts every aspect of life. Type one diabetes is a relentless job that I cannot quit. It is a job that is misunderstood and tests me every day, but one that teaches me so much too.

Olly is a Young Leader for the Together Type 1 programme. He supports others with type 1 and helps to improve diabetes care. He's calling on children and young people aged 11-25 to join the programme, so they can connect with others and feel less alone.