5 Things They Don't Tell You When You're Diagnosed With Type 1 Diabetes

Cazzy Magennis
Written By:
Cazzy Magennis
Last Updated:
April 10, 2020
A lighthearted post on the things they forgot to mention when I was diagnosed with type 1 diabetes, almost 10 years ago....if you can relate...let me know
type 1 diabetes diagnosis things not told

Let’s face it, diabetes sucks. You know it, and I know it, but that doesn’t mean we can’t be strong and work through it. Of course we can, we are all warriors, and some of us, robot warriors.

Anyway, I thought I’d do a little post on the things that they “forget” to tell you when your diagnosed with type 1 diabetes.

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Ignorance is bliss

No one told me that everyone was going to think I got type 1 diabetes from eating too much sugar. No one told me that I would constantly have people telling me that cinnamon could cure my diabetes, and no one told me that people would cringe when I tell them I have to inject myself and return with “oh, I could NEVER do that”. Good for you Pam, if I don’t, I die, it’s very simple.

My favourite...

How you’ll never feel awake again

One of the joys of having a chronic illness is the feeling of tiredness, 24/7. This counts for mums, dads, sisters and brothers of type 1 diabetics too. You don’t need to have T1d to actually suffer from the dreaded tiredness.

This tiredness comes in a variety of forms. It could be:

  • Lack of sleep due to highs and lows
  • Lack of sleep due to anxiety of highs and low
  • Lack of sleep due to the stress of managing diabetes 24/7
  • General highs and lows

No doctor mentioned to me that I’d gradually grow to rely on caffeine, and that without it, I’d become a pretty grumpy human being.

I could sleep for 18 hours (I have done that before), and still wake up exhausted.

How you’d become an encyclopedia for nutritional content of foods

No one told me I’d have to take a carb counting course in general, but no one mentioned I would become an expert in the field either. I do it without even thinking, I count the carbs in what people around me are eating, and forget they don’t need to worry about that.

No one said I would have to do maths, and by maths I mean work out ratios for different boluses and basal rates at different times of the day. For someone who was pretty weak at maths at school, I didn’t think I would be qualified for the job. Maybe that’s why I miscount sometimes, eh!

That I was on the path to becoming part-robot

I actually think robots are pretty cool, but no one mentioned that I was morphing into one gradually. On diagnosis there was no CGM or FreeStyle Libre fuss, not even a mention of an insulin pump. Just a classic pen situation. Little did I realise that over the years I would start using robot type technology, and the world would think my FreeStyle Libre was a nicotine patch.

That it’s actually hard work with no pay or holiday

I remember my diagnosis pretty well, it wasn’t a lovely occasion (but when is it ever?!). But, I remember just being given some leaflets, some insulin pens and being told to inject 3 times a day, and it didn’t matter what I was eating.

God, they made it sound SO EASY. Forgot to mention the carb counting, ratio sorting, honeymoon period, different doses for different parts of the day, different duration's of insulin, the fact exercise can make you low, the fact lifting weights can make you high, the fact periods can make you high, alongside stress, sickness, anxiety and just about anything.

Nope, no one whispered anything about that.

I didn't realise I was in a job interview for a job I didn't want, and no one ever mentioned about the whole no holiday's thing, otherwise I'd probably have walked away...

What they really don’t tell you is...

that you’re going to be part of the best community in the world.

Am I biased? YES I AM! But who cares? This online community of diabetics and friends/family of diabetics is world-class. Finding people who can actually relate to your feelings, and know what you’re going through is just a stress reliever in itself.

The friends and connections I’ve made through Instagram, Facebook, Twitter, Pinterest, and of course my blog, are amazing, and I don’t think I’d be where I am today without it all.

Other diabetics are the ones who inspire me to keep going when it does get tough, and they’re the ones who I believe when they say it’s going to be okay.

These are some of my favourite accounts and inspirations: 

Beyond Type 1

Tattoos, Travels & Type One

Pepmeupdiabetes.blog

mathewlcarter

The Diabetic Journey

There are many more, but this list would be too long.

So, now I know the things that the doctors conveniently forgot to mention, I consider myself a diabadass and a warrior at best. And, if you're reading this, then you are one too, or know one close to you.

So keep doing what you're doing, because it's pretty damn impressive!

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