Type 1 Diabetes. I have it.
Sometimes it comes up organically - coincidentally, someone with raise the issue of diabetes and I'll chime in, "I'm actually a Type 1 Diabetic."
Sometimes it'll be related to food - "why don't you have some cake?" or "do you want a drink?".
Sometimes I'll be using, or someone will see, my pump, and they'll ask about it.
And sometimes, I just feel like talking about it - to fill an awkward silence, to tell someone 'about me', or to explain why I might be feeling a bit 'off'.
Sometimes it feels like a chore to explain it - it feels like I do it all the time - with both people I've told before and new people.
Sometimes I enjoy telling people - it's a topic I know about, can speak confidently and knowledgeably about, and feel almost like I'm teaching when I do.
Sometimes I feel almost proud of it - not like it's an achievement (although living with T1D feels like an achievement), but like it's a part of my identity - it makes me unique.
And sometimes I feel very self-conscious about it - I worry that people will feel squeamish about the cannula, or see me as weak, broken, or defective. #insecurities.
How I feel about being a diabetic is largely situational and is affected by my mood at the time.
Regardless of how it comes up, how I feel about it, or my mood when I'm talking about it, I always struggle to impress upon people just how complex, difficult, and all-consuming living with Type 1 Diabetes is.
It's difficult, because it's an abstract for anyone without it. I get it - before I had it, I knew nothing about it because I didn't need to. I didn't have it and no-one I knew had it. All I knew about diabetes was that old people had it and it had something to do with sugar. Technically I was right, but also very, very wrong. If you haven't lived with it, in some form, you can't understand it, or the command it had over your life. Even now, I struggle to articulate just how life-altering, and all-consuming, it is.
So here's my attempt - my analogy - at explaining, to the uninitiated, what it means to have Type 1 Diabetes.
Imagine having to monitor and control something that your body does automatically, like your heart
...this is apples and oranges, I know, but it makes things less abstract for newbies.
Your heart can beat ~144K times a day, automatically. You don't think about it - you rarely even know it's happening, your body just takes care of it for you - beating faster and slower to compensate for 'life'. Now think about the days when you exercise, for example. Your heart needs to beat faster, to keep you alive under the stress. Your body can calculate and automatically adjust instantaneously - second-to-second, like a microprocessor - to the beat-per-second - how fast your heart beats so that you stay conscious, feel fine, and can go for that jog, play that casual game of soccer, or go for that unplanned 30-minute walk along the beach, oblivious.
Now think about all the situations in your day-to-day when your body does this - automatically adjusts your heart-rate. When you have depressants (like alcohol), when you have stimulants (like an energy drink), when you sleep, exercise, get excited, have sex etc. Then think about the less obvious things in life, that change your hear-rate, like when you get sick and have a fever, take medication, get pregnant, get injured, when your hormones change, puberty, menopause, when you're scared or stressed-out, have a panic-attack or get anxiety, when you're happy or sad, when you eat something with low GI or high GI etc. Your body manages all this on autopilot to make sure (1) your heart beats 'just right' from one second to the next, and (2) that your heart actually beats at all!
Now imagine your body can't do any of that automatically. Imagine you have to manually make your heart beat, change the speed, use quick math to adjust the rate based on hormone changes, exercise, blood viscosity, and that bread-stick you ate 20 minutes ago. Now, finally, imagine that there's a delay between when you make a change to your heart-rate, and when your heart gets the message - let's say 30-60 minutes - so you have to make the change before you eat, or go for a walk, or have sex - you have to plan, for everything.
You are constantly thinking about it - 24/7/365. Of course, you can't think about it when you're asleep, but you do actually have to plan for sleep! - for the rest of your life, because if you don't, you die.
But even if you do plan 24/7/364, chances are that one day when you didn't manage it well means that 30 years down the track, you'll lose your sight, have to have a foot amputated, or go into renal failure - all because you were a little lazy one day - you relaxed a bit. Not because you took a whole day off - you can't ever take a day a day off - but just because you ate a bit too much and didn't plan for it because you just wanted a day - one of thousands - to no let it run your existence. But because of that one day, 30 years ago, now your kidneys don't work, you walk with a limp and your depth perception is... poor.
Now - yes, there's one more, because life's grand - imagine that the calculations, compensations, routines, and shortcuts you learned, dialled, and finally got comfortable with enough to feel a little secure in managing your 'heart' yesterday, won't work tomorrow - just because... life, the human condition, the wrong combination of stardust.
Starting to get an idea now? Yep, It's a little rough.
Now, all that sounds a bit dramatic, I'll grant you. And maybe it is a bit 'woe is me', but it's the life of a Type 1 diabetic. It's a chronic (life-long) illness, that requires constant/persistent/never-ending management and focus (ever feel mentally drained after concentrating on something for one hour?). We can make things marginally better with the use of an insulin pump (instead of needles and daily injections), a continuous glucose monitor (instead of 20+ finger-pricks a day), and routine/strategic diet (like the ketogenic diet - this isn't just a fad diet, it's roots are in medical science!) to smooth out glucose levels and bring the average down. But that's all more... stuff. More work, less fun. More things to carry in your pockets, attach to your body, maintain, and think about.
Nevertheless, it's not optional, so we make-do and find the best balance we can. Because, what alternative is there?
To finish, let me say that I get the other side of the conversations As I said a little earlier, I have T1D so it's relevant to me - I know about all this, in great detail and complete comprehension, because I need to. You (the person I applaud for making it this far, and I'm sure if wishing they hadn't bothered) aren't affected by the illness (unless you are, in which case hey! what-up?), so I don't expect you to fully comprehend the struggle, or even remember the details. I don't know much about Bipolar, Crohn's, or Hashimoto's because they don't affect my life directly. It doesn't make me ignorant or uncompassionate - I just can't know everything about everything. We all have only so much time so we focus it on things we care about, enjoy, or are responsible for. So, if you want to know about Type 1 Diabetes, I'll try to explain it as best I can, but I won't expect you understand it to the level I do, because it's my burden, not yours.
If you're a visual/auditory-type person, then give this a look - maybe it'll get the idea across better than this diatribe.
A day in the life of a Type 1 Diabetic (T1D.)