What It Feels Like to Live With Diabetes

We’re almost in the middle of diabetes month, and we’re supposed to be raising awareness of diabetes, so today I’m pulling this very awareness-ey post out of the archives.


It feels incredibly permanent. It’s only been with me for the past eight and a half years, and yet I struggle to remember a life without it.

It feels incredibly monotonous. Checking my blood sugar. Weighing my lunch on the kitchen scales. Looking up carb counts on my iPhone. Pulling out my pump to give an insulin dose. Checking my blood sugar again. Pulling out my pump to glance at the insulin on board feature. Deliberating over a correction dose. It’s pretty hard to muster the enthusiasm to do the same thing over and over each day.

It feels extremely isolating. The twinges of jealousy that surface as I watch others my age who can live like there’s no tomorrow. Wondering if anyone around me can truly comprehend the burden of my condition.

It feels incredibly frustrating. One day can be perfect, while the next can be a complete trainwreck. I can do exactly the same thing that I did yesterday, and get a completely different result today. I can make a decision that makes complete sense on paper, and then stare at the result in disbelief.

It feels utterly exhausting. The physical and mental effort that this condition demands is huge, that there are days where I am left struggling to give my 100% to everything else.

It feels incredibly worrisome. Pushing thoughts to the back of my mind about what my future will look like. Wondering if I am doing enough today to ensure that I will live a healthy and complication free life.

It feels painful. Stabbing the tips of my already blistered fingers. Sticking a gigantic needle into my stomach to insert a new infusion site. Feeling the sting of insulin going into an overused area of skin tissue.

It feels ever so emotional. The journey from high to low and everything inbetween can be an emotional rollercoaster. It’s so hard not to let the numbers get to me.

It feels immensely guilt ridden. Pangs of guilt accompany every single decision I make that has an undesired outcome on my blood sugar.

It feels extremely disruptive. It doesn’t care if I’m trying to work, if I’m trying to sleep, or if I’m trying to chill on the weekend.

It feels incredibly close. Finding my tribe, who I can turn to when I’m having a shit day. Finding folks in the Diabetes Online Community, who I can reach out to at 3 in the morning while I’m waiting out a low blood sugar. Being able to hear the two most powerful words in the english language. ‘Me too.’ Making my world feel that much smaller.

It feels experienced. Every passing day arms me with that little bit more knowledge, that leaves me better equipped to deal with this condition. Like finding another piece in an incredibly difficult jigsaw puzzle.

It feels confident. Confidence to speak up for what I want from my healthcare professionals. Being my own advocate. Sharing what I feel passionate about. Finding my comfort zone when my condition has thrust me far from it.

It feels grateful. Grateful that thanks to modern medicine, tools and technology, my life has a far brighter outlook than it did a century ago.

It feels lucky. Lucky that I live in a country where insulin, test strips, pump consumables and healthcare won’t send me broke. That I have a supportive family and a job which affords me these privileges.

It feels incredibly heartbreaking. Heartbreaking that in this day and age, people are still can’t access the basic tools and healthcare that they need to survive. Heartbreaking that these tools of survival are tied to income and extremely costly insurance premiums. Heartbreaking that without the subsidies I am afforded, these tools are extremely costly. Heartbreaking that people are still dying in some parts of the world because they cannot get their hands on the luxuries that I take for granted.

‘Dumbing Down’ Diabetes

So, how does it work?

The pump does two things. It continuously delivers a rate of insulin in the background to keep me stable. Then I also press a few buttons on the pump to deliver insulin every time I eat. The other end of this line just connects to a little piece of plastic that sits underneath my skin. 

So, do they have to implant it?


And you don’t need to use any needles?


I definitely feel guilty of ‘dumbing down’ my diabetes when I’m trying to explain it to people who don’t have diabetes.

I’m more than happy with this approach. I don’t have to twist my tongue trying to explain the complexities of this freaking condition every time, and those on the receiving end will get my point more easily.

But I guess the one little flaw in this approach is that the people around me will never see just how many decisions go into managing my diabetes each and every day.

Nobody sees the fasting that I have done at all ends of the day in order to ‘test’ the rate of background insulin that the pump infuses into my body every three minutes. Nor all of the decision making that goes into adjusting those background rates of insulin to get them perfect. The same could be said if I were managing on needles.

Nobody sees me searching for the carb counts of different foods on my phone, weighing food items on kitchen scales and doing the maths to come up with a carb count for a meal so that I can tell my pump how much insulin to deliver.

Diabetes needs to be considered in almost every single activity that I undertake, and nobody sees just how heavily all of these decisions weigh on me. It’s hard to separate emotion from the numbers that show up on my blood glucose meter, given they’re a direct result of the decisions I’ve made. A ‘good’ number can totally validate the decision I’ve made, while a ‘bad’ number can make me feel guilty or a failure.

3,099 days with type 1 diabetes might feel remarkable, but the number of decisions I’ve had to make on my own in that time amounts to much, much more than any of these stats could ever show.