It's what you don't see

On World Diabetes Day, I thought it would be appropriate to share this piece of my heart with you. In collaboration with fellow type 1 diabetics, I finally finished the post I've been working on since 2016.

14 November 2018

The hardest part about having an invisible illness is that it’s invisible. From the outside, nothing seems to be wrong. Being able to see and visualize something makes it so much easier to understand. Don’t get me wrong, I don’t want your pitty or sorry’s. Explaining an invisible chronic illness to someone is similar to explaining colour to a colourblind person. In a way, you can image or guess what it’s like, but you can’t possibly fully comprehend it.

The reality is that an invisible illness is something you don’t “get”, until you get it.

What you see, is an ordinary woman or man, girl or boy, living alongside you. Doing what you do, liking what you like and talking like you talk. What you see, are tired eyes and some bruises; which go by largely unnoticed, since everyone's tired.

What you see, is a normal person- not much seem different, if anything. And sometimes that’s exactly what we want: we want to fit in. Seamlessly. We aim to be as “normal” as possible. We don’t want to draw attention to ourselves. Being healthier than you are proves to be an enormous challenge.

Truth is, we are far from normal. Those little things that make us different, or my preferred word: unique, that has such a big influence on our lives.

It’s the agonizing fear of dying in your sleep.

It’s the countless sleepless nights trying to avoid the luring deep sleep of a hypoglycemic coma.

It’s gobbling down glucose tablets and juice boxes even though the thought of food makes you feel sick.

It’s the CGM alarms throughout the night reminding you that your body urgently needs more insulin than you already gave.

It’s laying awake, not knowing how you will afford your next batch of insulin.

It’s checking the weather each day to make a prediction of the effects that it will have on your body.

It’s always being cold or too hot.

It’s taking vitamin and mineral supplements since your body can't store and use them well.

It’s being anemic and bruising and bleeding too easily.

It’s having pains where you didn’t think anyone could have pain.

It’s injecting insulin at least 6 times a day, usually more.

It's ripping out your cartilage or bumping your CGM against the door.

It’s being judged when eating a cheat meal or made fun of when you eat your packed lunch.

It's calming your crying child because he wants a cupcake that you can't let him have.

It's constantly explaining that you did nothing to get type 1 diabetes, and there was nothing you could do to prevent it.

It’s being too shy to wear a bikini, because then the world will see your scars, bruises and lipohypertrophy.

It’s being unable to loose weight, despite working so hard to do so.

It’s losing handfuls of hair whenever you take a shower; having a real fear of going bald.

It’s a simple cut on your foot from months ago that is not healing.

It’s the co-morbidity of OCD, anxiety and depression that creeps up on you.

It's the feeling of being all alone, despite being surrounded by friends and family.

It’s being unable to focus or study since you’ve been battling high blood glucose for a week.

It’s being too proud to ask for help even though you’re killing yourself not.

It’s getting a comment like “at least it’s not cancer” when you do speak up about you health.

It’s the fear of developing cancer, since the stats are against us.

It's facing your boss after calling in sick again.

It’s being scared of getting a cold because it turns into pneumonia in days.

It’s not going to hospital when you know you actually need to, because you know that you will stay there for days or weeks.

It’s fearing complications like retinopathy, kidney failure and amputations.

It’s not knowing whether you will be able to have children one day, and self doubting whether or not you will be a good parent if you sometimes can’t even take good care of yourself.

...

If I’ve got you in a depressive state, I’m not really apologizing (just a little). We are too stubborn to give the world a glimpse of the invisible. But, do read my blog about the best things about being a type 1 diabetic; by clicking here. Trust me, it might sound as if it is just terrible to live this way, but there are many positives too. Read about life as a chronically ill Christian too.

Shoutout to all my @BeyondType1 friends and @type1grace followers for your valuable inputs. Although we all are chronically ill, spoonies and type 1 diabetics, there are many differences between us. We are brave and courageous, but also vulnerable and tender. We know that the outside world won’t understand, that’s why we support each other.

On this World Diabetes Day, become more aware of everything you take for granted. Health is a crown worn by those who are healthy, but only seen by those who are ill.

I am very grateful for being alive, receiving the needed support and intervention. I am blessed from above, but kept on my knees. I am incredibly thankful for friends, family and the very best boyfriend for trying their very best to help and support me in all ways thinkable, even though I know that it’s impossible for them to fully understand the situation. ❤️💙

Feel free to subscribe to my blog, share it or add any comments you wish to add (keep them positive..😉)

With love, as always,

@type1grace

Ané xx