I am the mother of a child who has an invisible disease, the mother of a Type 1 Diabetic.
They seemed capable, like they were ok. It looked effortless and as if it was just no big deal. Vaguely I understood they took insulin; I didn’t know that it wasn’t the kind you might be able to make all better by just being more fit and eating healthier in some cases. What I knew of Diabetes was the tiny fraction of misinformation put forth by the media and all of the jokes at the expense of Diabetics.
“Eat like crap, this could be you.”
“Be healthy, or else.”
But it’s no big deal, it doesn’t affect their daily life, It’s just an unfortunate thing.
So utterly wrong.
I can admit that, easily. I can’t quantify how wrong I was. I’ve not only peeked behind the curtain, I’m living there now. I see what goes into making it look easy. When people call it an invisible disease, they aren’t kidding. The average person has literally no inkling of the fear, stress, cost, and attention that Diabetes requires. They don’t see what it takes to make it work, and that there is no stopping, no break, no respite.
I worked with a dear friend for two years, knowing she had Diabetes, but it wasn’t a thing. Once in a while she was out, but nothing beyond anyone else. I never saw her treat herself; I never saw her need anything, and she never discussed it. For 40 years she’d been dealing with it quietly, and I had no idea even though I saw her for most of every day.
Tonight I sat down beside a pile of supplies to take care of my little girl. Alcohol wipes, adhesive remover, insulin vial, insulin pump chamber, filler syringe. We do this every three days, I puncture her skin, we count together and hold our breath as the needle pops into her. We make a humming noise so she can’t hear the click that startles her. We check to make sure it went in right, we have a ritual. After three years it’s routine, though once in a while I remember having a different life before. I try not to do that. We create medical waste on the daily. I see my daughter’s blood every single day of her life, more than once. I could never have imagined that before this. The first time my son got hurt and I saw his tiny lip bleed, I cried. I’m just about immune to the sight of blood now.
It’s never bothered me, I have a strong stomach, but seeing my child bleeding is different, it lets me know that my heart is the weak part.
I want her to be seen for the soldier she is, and has been since she was just three and a half years old, and age no one should learn survival at.
I want her to be safe, for those who meet her to see beyond her Diabetes but still respect it has the power to take her from me and be ready to fight with her.
I want people to understand what she goes through so no one disparages her for something she had no choice in.
I want her to be safe, to be loved, to be as free as possible, to not be defined by what is unavoidable and incurable, but by what she is. If her disease continues to be a tiny footnote, a misunderstood punchline, I will have failed her, and so will the rest of the world. She, and all of the amazing fighters like her, deserves better than this.