Invisible/Visible Disease

My blood sugar had been running infuriatingly high the other day, for reasons that will remain a mystery for all eternity. Fed up, I just took an assload* of insulin with my dinner – and, like clockwork, my blood sugar nose-dived while I was on the subway later that night. Too late, my Dexcom alarmed LOW, and I pulled it out to see a chilling two arrows straight down (you’re crashing!).

The 1 train was packed, and I was standing. I took out my meter-remote and tested my blood sugar while the train was bouncing back and forth. Normally I’m pretty good at this, but in this case, I was shaky as hell from the low, so it was tricky. My meter confirmed that I was in the high 40s, and the Dexcom continued to vibrate as much. Fortunately, I had a juice box in my tote bag, so put the meter away and struggled heroically with the DAMNED PLASTIC WRAPPER AROUND THE STRAW (my arch-nemesis) until I finally got it open and, drank my juice.

Then came the truly awful part: the minutes (which feel like hours) between treating a low and when the glucose finally kicks in. I felt shaky and lousy and lightheaded and vaguely nauseous, etc etc etc. So when, at the next stop, a seat opened up on the crowded train, I didn’t feel any compunction crashing into it.

I sat. And I waited.

And then an old lady got on. She scanned the crowded train for a free seat, and didn’t find one. So then she scanned the faces of the people who were sitting, probably to shame someone into giving her a seat.

And, most unfortunately, we made eye contact.

When I was 9 (and not-diabetic), my family was living in Paris.  We were on the bus when an old French lady got on and, when I didn’t think to offer her my seat, proceeded to lecture my parents at length about their weak parenting skills in raising such a thoughtless kid. Ever since that chilling day, I have feared the shaming power of old women. I look forward to being one myself one day and getting to taste such power – it’s probably a major high. Since then, there is not a train, bus, or waiting room that I’ve been in where I won’t scramble out of my seat to offer it to any human over 60 who enters.

But I’d never had this situation occur before. My need to be polite and considerate was suddenly directly at war with my physical condition. This was not just any old subway ride. My blood sugar was, at last check, 48. Even from the seat, my legs were gently shaking.

So I held eye contact with the old lady. And I didn’t get up.

It was an odd moment. She retreated into a facade of self-righteousness, signaling her disapproval with a glare and turning away from me. Someone nearby finally offered up their seat and she took it, glaring smugly at me all the way.  And she will live the rest of her life thinking of me as nothing more than a spoiled Gen-Xer, probably assuming, like the old French lady, that I just wasn’t raised to respect my elders. Of course, she’ll forget about me soon, if she hasn’t already, but until she does, I’ll just be that jerk on the train who lacked all consideration.

In many ways, I’m very grateful that my disease is, for the most part, an invisible one. When I was first diagnosed, it felt like I might as well walk down the street with the word “DIABETIC” tattooed to my forehead. I was sure the mass quantities of needles and insulin and testers and test strips and various supplies I carried around would mark me as SICK to the rest of the world. I used to rush off to the bathroom to inject insulin at restaurants – I didn’t even like testing my blood sugar if I thought someone was looking.

As time went on, though, I realized one beautiful truth: no one is looking. These days, I inject insulin everywhere. I test everywhere. Sometimes I will literally test my blood sugar while holding eye contact with strangers on the subway platform, because I’m frankly blown away about how they straight up do not notice what I’m doing. No one cares. And that’s a beautiful thing.

And yet it’s all there, just under the surface. If I were to lift up my shirt you’d see the tube sticking out of my belly and the plastic transmitter attached to my side. The injection scars that are already starting to form. If you take a close look at my fingertips you’ll see how callused they are from all the testing.

If you were to analyze the contents of my purse, or my other bags, you’d realize that they are 50% diabetes supplies. If you were to walk around my apartment you’d see boxes of pump supplies and CGMS supplies. Take a look in my fridge and you’ll see the insulin next to the yogurt. And you’ll notice loose test strips EVERYWHERE – as much as I try to keep track of them there’s always always one or two that wind up on the floor, behind the couch, on the bathroom counter.

errant test strips. Always errant test strips.
errant test strips. Always errant test strips.

But to a stranger who’s glancing mostly through me, those things go unnoticed. This is, I’ve decided, mostly a blessing.

Until it’s not. There are some occasions when it would just be a lot easier for people to be able to see me and recognize that I’m sick. On the train, for instance, although I realize that this impulse is motivated entirely by my pride, by my unwillingness for some stranger to perceive me as rude… which is, in and of itself, pretty selfish.

But it would be easier for people just to understand. The irony, of course, is that the longer I’ve had diabetes, the healthier I’ve looked – I’ve lost weight, which is traditionally a symbol to the outside world that you’re getting healthier, that you deserve to be praised and complimented for your hard work. And it was hard work, losing weight. But it is harder work to manage diabetes (and I guess to a certain extent they’re one and the same.)

The other day, in a moment of self-pity, I asked my mom to confirm that I was doing a good job with this. “You’re doing such a good job with this,” she said, “that sometimes I forget you have diabetes.”

The ultimate compliment. Because when you guys forget, I can forget, too – or at least pretend, pretend I’m not sick, that I’m just the same, that nothing’s changed. That’s pretty great.

Most of the time.

But then there’s those times when you just want what’s going on inside to be reflected on the outside so some old jerk on the train could just give you a break, goddamn it.



*assload: Scientific term for: several units more than my insulin pump or endocrinologist would have approved of. .

One thought on “Invisible/Visible Disease

  1. I remember reading some advice/ethics column where a guy who was undergoing chemotherapy (but wasn’t visibly ill) asked if he could start carrying a cane (that he didn’t need) just as a visual marker of being unwell and getting people to offer him a seat… I think the columnist sort of objected to that, but I understand the appeal…


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