Once, I went to an offsite meeting and spent two days leaning against a pillar for support. During a break, a participant from another company talked to me about it.
“I have a back condition,” I said, by way of explanation.
She nodded, and looked at me with sincerity. “I’m sorry you’re in pain,” she said.
I was touched by her empathy, but also baffled. I was standing to avoid pain, so her sympathy was misplaced.
I could have explained myself to this woman. Sitting was the problem, standing was fine. I could have asked her to defer her sympathy until I was seated.
Except no one would offer their sympathy to a sitting person. Because, for most people sitting is equated with comfort.
I could have explained this, but I didn’t. I wasn’t likely to work with her after this meeting. She didn’t need to know my quirks. And I didn’t want to punish her with a lecture for this attempt at kindness, so instead I said, “Thank you.”
I often feel myself hovering in this strange sort of nether region just outside of people’s expectations. Nowhere is this clearer than in doctors’ offices. Early on, I used to correct my doctors when they mentioned my back pain. “It’s sciatica,” I’d say. Or, “It’s my legs.”
“Right,” They’d say, as annoyance flashed across their face. “But sciatica is usually caused by a back problem, so it’s considered back pain.”
It was as if I’d interrupted to say that a thumb is not a finger. They were irritated by my hypercorrectness. I was irritated by their misleading terminology.
After a beat, they’d go on to say whatever it was they were saying about back pain.
Talking about treatments was even more frustrating. “We can talk about pain medicine,” they would say. Or, “Let me refer you to a pain clinic.”
“Pain isn’t my problem,” I’d say. “Cramps are my problem. And I don’t see how pain meds will help with cramps.” Or, “What do you think about a muscle relaxant?” Or, “Could I get a sleeping pill?”
This correction never accomplished anything. The doctor would finish outlining my pain management options, and I’d be left wondering what I was supposed to do about these stupid cramps.
Admittedly, my inability to sit is an odd sort of limitation. Sick people are supposed to rest. They’re supposed to stay off their feet. Besides, I look so awkward when I’m trying to be comfortable. Gracious people can’t help but try to correct the situation.
“Can I get you a chair?” The waitress said. She oozed concern. Her eyes widened and the corners of her mouth tugged down on my behalf.
“What? No, I’m okay,” I said, gesturing at the chair right beside me. “I have a back problem. It’s more comfortable to stand.”
“Are you sure? I can get you another chair.”
“No, I’m fine. Thank you,” I said.
The waitress nodded, unsatisfied, and disappeared into the kitchen.
“They really want you to have a chair,” my then-boyfriend said.
“Welcome to North Dakota. They’re really concerned about you.” We both picked up our chopsticks, and dug into our stir fries.
“Excuse me, I brought you a chair,” a waiter – a man this time – was indeed hauling a padded chair out for me.
“Oh! Um, thanks, but I’m okay,” I insisted, gesturing at my chair again. “I just have a back problem. I’m really comfortable standing.”
“Are you sure?”
“Yes. But thank you. It was nice of you to be so concerned.”
He eyed me doubtfully. “You’re sure you’ll be okay like that?”
“Positive. I’m used to it.”
He frowned as he dragged the chair off with him.
When I started making appearances at the office after my surgery, I felt caught in a narrative trap. Well-meaning coworkers would stop by my desk. “How’re you feeling?” They’d ask, a chipper smile pasted on their face.
Confronted with the question, I realized there was right answer and a wrong answer. The right answer was, “Oh my gosh, SO much better! It’s like night and day! I should’ve had this surgery ages ago.”
The real answer – the wrong answer – was, “The surgery didn’t do anything. My nerve is still horrible.”
Stuck between these options, I carefully picked my way around the truth. “I feel a little better,” I’d say, which was true, because I was sleeping again. “But my doctor says it can take a long time for nerves to heal. So, we’ll see.”
They would nod, slightly crestfallen, and say something polite. Like, “It’s good to have you back.” Or, “Recovery can take a while. Hang in there.”
Illnesses are supposed to follow a story arc. You get sick, you get treated, you get better.
Our social scripts are based on this assumption. If someone gets sick, you say, “Drink lots of fluids.” Or, “Do you want my urologist’s number?” Or, “Do you want some CBD oil?”
If someone just saw a doctor, or went to the emergency room, or got carted away in an ambulance, you say, “What did the doctor tell you?” Or, “How did the surgery go?” Or, “Did they put you on any meds?”
And once the crisis is over, and the care plan is established, you say, “Take it easy.” Or, “Glad you’re doing okay.” Or, “Feel better soon!”
It’s nice. It’s neat. And everyone knows what to say.
Except, sometimes illnesses depart from this pattern. And then what?
If someone says, “I’ve seen dozens of doctors, and given half my weight in blood. And no one can tell me what’s wrong.”
You say, “________________________.”
If someone says, “I went to the emergency room, and the doctors couldn’t find anything wrong with me.”
You say, “________________________.”
If someone says, “My surgery didn’t work, and neither did any of the other treatments. I’m at the end of my rope.”
You say, “________________________.”
I’ve been that someone. I’ve said those things. And even I don’t know how to fill in the blanks.
The irony is that I still find myself on the other side of this trap. I’ll be talking to someone with a chronic illness. Perhaps they’ve exhausted all their treatment options. Perhaps they have a treatment regimen they’re perfectly satisfied with. Perhaps they’ve resigned themselves to living with an unnameable thing.
I’ll listen, and bite my lips to keep my first thoughts from slipping out. Have you read Back Mechanic? Or, Did they mention fibromyalgia? Or, I hope you feel better in the spring!
Assuming the role of armchair diagnostician, or helpful apothecary, or sunshine dispenser, is a wonderful temptation. It feels altruistic.
I can help this person, I think. I can solve their problem!
I do not think, I am in love with my own cleverness. Or, this conversation is too depressing for my own liking. If these sentiments are part of the filter that brings thoughts from mind to mouth, they blend in well enough to overlook.
I feel the words bubble up. Are you sure you want to do the surgery? Or, At least your grandkids live nearby! Or, Maybe try weightlifting?
I keep my teeth together, and cast about for alternatives. “I’m sorry,” I say. Or, “That sucks.” Or, “It sounds like you’re doing your best.”
These phrases land awkwardly. They’re off script. The rhythm of call-and-response is interrupted.
But, I remind myself, maybe the script wasn’t right in the first place.
So very true! The worst for me is, “How about my chiropractor?”