I can barely remember not being diabetic, which is funny, because I've only had it since I was 18. It's not something about which I grit my teeth together and mutter, "Oh how I long for the good old days" as I blissfully bask in memories of sodas that WEREN'T diet and trips to the corner gas station with my best friend to buy packets on candy. I don't remember what it's like to not read nutrition labels and count carbs for all my meals. Or squeeze tiny drops of blood out of my fingers several (okay, 8-10) times per day (it doesn't hurt anymore, but it used to).
I'm not sure what I could tell a non-diabetic who has a loved one with this disease--what are some things that I could explain that you wouldn't necessarily find in a medically-based synopsis?
First, it always comes with fear. You have to learn to live with the fact that you're always one bad mistake away from dying. Rarely do I have a night where I don't have the thought flicker through my head, "What if I have a low blood sugar in my sleep and never wake up?" Of course, I've always woken up, so far. But to be taken like that, unprepared, haunts me.
Then there's the hassle when you get sick. When all you want to do is curl up on the couch and do nothing, you have to stay on top of your disease, because your body produces more sugar when you're sick to give you energy to help fight off the illness--which, I imagine, is super helpful to non-diabetics. For diabetics, it means higher blood sugars, which means feeling ill from the bad sugars on top of feeling ill from just feeling ill. It also means that that extra sugar is not being utilized to help our bodies heal faster, so we tend to stay sick longer. Of course, we try to adjust our insulin as needed to account for the spikes, but by the time you've gotten the hang of how much you need, you'll probably start getting better again.
And when you catch a stomach virus? You're watching your levels like crazy, because all that not-eating can lead to a low blood sugar, and a low blood sugar when you can't eat or drink anything is kind of bad news. If you don't want to pass out and have a seizure, you should probably have someone on call to take you to the hospital if your sugar drops. S was taken there last year after a bad low during a stomach virus and was promptly given an IV with a squishy bag full of pure sugar (dextrose, he thinks). The veins in his arm were hardened for a month. The memory of seeing him lying on the floor, dazed, is something I try to push out of my mind. I have never had it that bad, though I did have a low while being extremely nauseous a few months back, but I sat on the couch and took tiny sips of apple juice, closed my mouth tight to make sure they didn't come out, and rocked back and forth on the couch until the feeling passed and my sugars came up to acceptable levels.
There are also small inconveniences that you get used to. Sometimes I'm late taking my daughter places because I check my blood sugar right before I drive, and it's low--so I drink some juice and wait 15 minutes to check again. I have little, itchy red bumps and sometimes bigger, angry red rashes on various places of my body because my skin is not a fan of the adhesive part of my pump--but it gives me better control of my numbers and allows to bypass the 6 or so injections every day (however, you area also at a greater risk for DKA, a condition during which your blood becomes so acidic--often due to prolonged high sugars during a pump malfunction that you are unaware of--that your organs are in danger of failing). I always wear black pants so I can wipe my fingers on them if they have a little extra blood and there's no tissue available (I know this probably sounds gross, but I think most type 1 diabetics do this--after a number of years, the "gross" factor goes away). Going outside can be inconvenient because I worry about my insulin going bad--if I leave my pump in the car during this brief walk, will the insulin vial be okay, or will it get too hot? What if I go in a hot tub (I have to change my pump after that)? I get tired of carrying so much STUFF all the time. I wish I could have one of those small purses, but I need to pack my pump, a back-up pod, an insulin vial, a couple of needles, glucose tabs, a granola bar, and sometimes an extra tester.
And you know the suckiest part? Even with all of that, I know the worst is yet to come. I know that autoimmune diseases tend to stack--I've already gotten hypothyroidism on top of my diabetes diagnosis, back when I gave birth to Q. And there's a good chance there will be more. Sicknesses hit my body harder, complications seem inevitable, and type 1 diabetics are at greater risk for, well, pretty much everything. Even with good control. Sometimes it makes me feel tired and angry. Sometimes I have trouble articulating that I want so badly for Q to have a sibling because I can't picture her parents being healthy at 60 or 70, if we're there at all. But I have to weigh that against the heavy, heavy fear that another pregnancy would do irreversible damage to my body and my mental health--and that I can picture myself dying during delivery, calling out her name and telling her I'm so sorry to leave her when I know I'm her whole world.
This turned darker than I meant, but the point is, give some special love to those you know with "hidden" diseases, whose lives may well be harder than you've imagined, and who know it will be a lifelong struggle to keep up their mental and physical health. And God help me not to burst into a million pieces if my child or children ever got this horrible disease. I know how to treat it, yes, but I also have a deep, intimate knowledge of every impossible facet and life-altering implication.
