My Rare Disease Part 1: Sick

My Rare Disease ~

How do you write about being sick? What can you possibly say in an effort to share and educate without annihilating every sub-atomic dignity particle you ever thought you had? It’s one thing to discuss someone else’s blood and guts and gore, or to hear that a colleague puked up a kidney. We’ve been overexposed to mucous and snot and all manner of phlegm in the onslaught of media leaping linguistically and otherwise into the cesspool of whatever bodily fluids the mind and body can conjure. In this day and age, we’re so bombarded with everything from extreme toilet humor to horrific war-torn imagery that you’d think we could talk about anything. But if it’s you—if you’re the one with the fungal infection or the chronic fatigue or the cancer; if it’s you with the cancer, it’s different.

“Celiac disease, oh I’ve heard of that!” some sympathetic individual will exclaim. There’s usually a pause accompanied by a quizzical expression.

“So what exactly are your symptoms?” the curious observer will inquire.

“Intestinal trauma,” is my canned reply.

“O – Oooh, I get it,” the person responds with a knowing smile after just a moment’s thoughtful hesitation. And I typically successfully change the subject before my inquirer’s subsequent squirming turns into a full-blown seizure.

The truth is, there remain certain topics which invoke standard reactions, and those reactions render delicate the discussion of particular symptoms. The word diarrhea, for example, never fails to spark a feeling, be it humor or disgust. (Which did you feel just now?) Gas and bloating, even worse. We can laugh about these things without any problem at all. But when it comes to being serious, we bolt for the quickest conversation escape route.

I’ve been sick for a long time—at least fifteen years, but probably forever. I once had a stomachache for two years straight. When I was a little girl, I often complained of stomachaches, but for reasons I now chalk up to the child-rearing mindset of a baby boomer generation, my complaints as a young person were not always taken seriously. Eventually, I started to wonder if I was a hypochondriac, and, in time, I stopped complaining altogether. This may explain why it rarely occurred to me as an adult to talk to a doctor about my stomach problems. I came to believe they were normal. Most people, I have also found, are quite empathetic when it comes to physical discomfort. Every once in a while, I’d confide in a coworker if my stomachache was notably painful, and every time, without fail, that coworker’s hand would rise to her own stomach.

“Mine’s not feeling very well today either,” she’d say.

I would dutifully reply, “There must be something going around.” But I secretly thought that we all must have stomachaches every day and that other people just didn’t complain about them. I began to wonder how in the world all these people could be living in such agony and why I couldn’t handle the pain as well as they could. I was, eventually, to find out the hard way.

Next ~ Part 2: A History of Anxiety

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