I'm talking about not seeing how sick, tired, in pain, or ill some people are because the thing that makes them sick, tired, in pain and ill isn't obvious. Right now you'd never be able to tell I'm a diabetic because I've got my pump tucked away someplace you'd never see it, even if you were looking for it. I've got no physical deformity that identifies me as someone with whom you must be Americans with Disabilities Act (ADA) compliant. In fact, many people are generally surprised to learn that I am a diabetic, as if there should have been some kind of obvious, clear-as-day sign that I'm not normal. But man do I feel like crap today.
Wait, doesn't mal mean bad, or something?
My husband suffers from frequent migraines, but he tries very hard to hide his pain from everyone. I work with someone who has fibromyalgia, and to just look at her gives you no indication of how much she often hurts. A very good friend of mine has Lupus, but on her good days you'd never know she is as ill as she is because you just can't see it. There is a long list of chronic diseases that hide in plain sight, and hide in plain sight so well that many people over look how serious they are.
I've been thinking about this for a while, and I want to be clear that I'm not comparing diabetes, something which I think is fairly livable, to any of these other conditions based on "how much one suffers" with whatever they have. But the two major similarities between them and other diseases like them are that 1) You can't tell we've got it just by looking at us and 2) Trying to appear normal is exhausting, because believe it or not pretending to be okay can take a lot out of a person.
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| Creative Commons / Flickr: qjakeTired usually isn't this cute |
When I was a kid everyone knew I had diabetes. It was one of the first things everyone in class learned. "Carla has diabetes. If she falls asleep on her desk let the teacher know." I sometimes used it to get attention, and never more than in third grade when my mom got the whole school involved in the Juvenile Diabetes Foundation (now Juvenile Diabetes Research Foundation) annual walk-a-thon. I milked that for weeks. But I was keenly aware even as a child that diabetes made me different. I was the only kindergartner with an alarm clock in class that went off when it was time to eat a snack. I was the only one in my class- the only one in my entire grade- that left class a little early to go check her blood sugar and give herself a shot before lunch. And I was the only one who woke up in the nurse's office at some point during the first couple weeks of school because my blood sugar crashed and I passed out in class.
So eventually I stopped drawing attention to it, because once I hit junior high all I wanted was to be like everyone else. I wanted to eat pizza and drink Coke- not diet Coke. I wanted to eat cookies and not miss the last five minutes of whatever class I had right before lunch. I wanted to ride the bus to school and be allowed to sleep over at my friends' houses without my little sister tagging along "just in case." And I sure as hell didn't want to be a human pin cushion anymore. I didn't care for being called Diabetes Girl, either.
I spent years having to tell people about my diabetes right after telling them my name, and like I've said before it defined who I was when I was a kid. In spite of disliking the moniker, I was Diabetes Girl. My Sophomore year of high school the debate team signed up to help out at the JDF Walk-a-thon, and I'd kept my familiarity with the whole shebang under wraps. At some point however, one of my team mates found out, and I can still hear him in my head, talking to his mom who was one of the people coordinating the event: "Carla's one of the people we're helping!"
Well, really.
I won't get into my cynical rant on how little I feel people are helped by things like the JDF or JDRF when drug companies are making bank on us sickies and probably suppressing all research that would enable me to lead an Islets of Langerhans filled life without needles. (Besides, I've probably done it before.) The reason that this moment has stuck out in my memory is that it was just a nasty reminder that I was different in a situation where I wanted to be the same, and now people who had looked at me like I was normal now looked at me like I was someone who needed "helped."
But that was all in the past right?
Even if you take people knowing/not knowing I have diabetes out of the equation, there are just days I feel like crap and don't want to let on. I mean, I'll complain sometimes, but there are many days I just plaster a smile on my face and try to ignore the fact that my blood sugar won't go above 65 or below 325 or whatever. And there are days I'll pretend that I don't want to cry every time I give insulin because my setting went in wrong that morning and it hurts like someone stabbed me in the side. And I can't even begin to tell you how many times I've come in to work when I should have stayed home because the pump beeped all night long and I've gotten little to no sleep. What would be the point?
I guess the point is that even now I want to appear normal. And if I'm bone tired at the end of some days, then those who have it worse than me, and have a harder time appearing "normal" every day, have got to be even more bone tired. And that can be frustrating for their families, who actually get to see the pain and fatigue that is carefully shielded from the rest of the world. I had a conversation with my mom recently wherein she was surprised that my husband had been fighting a major migraine for a few days because he'd been over at my parents' house the night before and had seemed fine. He hides his pain from people well, and sometimes I wonder if people think I'm lying when I tell them how much he always hurts. They probably think he's exaggerating when he tells people how tired I am, too, because I spent most of my energy trying to appear healthy when I feel anything but.
I had to scan through a year and a half of Facebook posts to find this, and while diabetes isn't listed, that "etc" covers a lot of ground:
