“Do you mind if I ask?” they say.
I know what’s coming next. I do a lot of my networking over meals, and the question often comes when the person across the table notices one of my dietary quirks. Skipping the beer is a common one — it’s something I almost always have to do, and even though another person’s choice to eschew the booze could have a host of reasons he or she would rather not discuss, people often want to know: why aren’t I drinking?
Or sometimes it’s because there’s days when I can hide it, and days when a reasonably observant person can tell something’s off: “What’s wrong? Are you ok?”
When I just met the questioner, or am operating in a professional capacity, I prefer to deflect as politely as I can: “just some health issues, I’m ok, thanks.” (If I waited for a pain-free day to go out, you would find me 30 years later on some TLC reality show about people who never leave their homes.)
But curiosity gets the better of almost everyone. “Do you mind if I ask? What do you have?”
Why, people? Why?
I’m not exactly sure what’s behind the question, because I think it’s an established fact that litanies of other people’s medical symptoms are not a compelling topic of general-interest conversation. Do people think it’s polite to press me about it? Do they have an aunt with Lupus or multiple sclerosis or something and are thinking that on the off chance I have the same problem, they could relate to me better and/or offer advice?
Once I acquiesced to someone’s line of questioning after I politely refused juice, beer, tea, and soda. The woman seemed to have an unusually avid interest in The Question, and it turned out to be because she sensed a kindred spirit: she has interstitial cystitis, too (the reason I drink only water. My bladder’s got incurable bleeding ulcers, caught on camera by a particularly sadistic urologist. There. Happy you asked?).
If there’s a top ten list of things I don’t want to personally discuss with someone I just met, my illnesses are on it, along with that stash of Lisa Frank stationery from my childhood I couldn’t bear to throw away as recently as the year 2014, and maybe that time I was ignominiously fired.
The lowest moment may have been being berated by my date as rude for quietly declining to explain my illnesses to someone else who asked over dinner.
Now that may seem ironic, because I have published pieces about having chronic illness. So why not explain it all to everyone who asks? Because when I share about my health problems, I do it on my own terms, when I choose to, and because that public communication might help others suffering from similar things, or help their caretakers understand.
Not because a new acquaintance thinks he or she wants or deserves to know over a beer.
The great tuna casserole dilemma
But even in an essay about health problems, I still have the same general principles that I keep over a business lunch. Describing the illnesses at length just isn’t that interesting or useful. But what may be worthwhile, I recently decided, is tackling the issue of chronic pain in general, because people either don’t understand it at all (“yeah, but when are you going to get better? You must be feeling better by now”) or they can’t relate but genuinely seem to want to understand the experience of chronic pain.
“I can’t imagine what that’s like,” many, many people in my life have said when I open up to them about it. Should I try to make it imaginable?
To that end, the tuna casserole I ordered for lunch last week can itself be an example of what it’s like to live with a serious degree of pain.
It was a gorgeous and delicious casserole: savory tuna, tender noodles, and fresh peas all drenched in bechamel with a golden, crispy potato topping. But because my brain was on fire with pain from my lumbar spine, it was tough to eat. I managed about half the casserole at the restaurant. Hours later, I faced it again before bed and managed to finish maybe half of what was left. Then I tried one more time, for a very late breakfast, and finished it.
So for about 24 hours, I didn’t eat much besides one damn bowl of tuna casserole (this is why we should all consider refraining from exclaiming “you look great!” when someone has lost weight. Weight loss is not always intentional; nor is it always an indication of good health). Often, even food that I know is good produces a faint sense of nausea when I look at it — a feeling that my throat will close up if I try to swallow. The pain crowds out my hunger.
Shoes and other problems
Other times, severe chronic pain is like trying to function with static blasting in your ears. On a recent day of errands around the city, I had to ask every cashier to repeat him or herself when I got to the register. On bad days, it’s like the pain is a noise blocking out the stuff I need to hear.
There are other ways to describe it, like the perennial problem of putting on socks and shoes. In fact, to understand what it’s like to live with severe pain, imagine that every task, from putting on your sweater to crossing the street, is its own separate odyssey requiring your total concentration.
It’s as if the door to your office is up ten flights of stairs, and everybody but you can take the elevator.
Speaking of elevators, there’s a whole other problem. I recently boarded one from the train platform to the concourse, because stairs are tough for me on a lot of days.
“Aren’t we lazy!” a fellow rider declared.
Speak for yourself, lady.
No hikes for me
With major pain, your goals and anxieties in life undergo a serious shift. For example, when I’m teaching a class or appearing on a professional panel, I don’t get nervous about the public speaking. All my nerves are already taken up by preparing to physically get through it.
Maybe, if you’re a healthy person, you occasionally muse about whether you could hike the Appalachian Trail or go base-jumping if you really tried. Now imagine applying that same level of curiosity and trepidation about your courage and physical prowess to the question of whether or not you can handle a trip to the nearest Wawa tonight (and you’re not even the one driving).
Or imagine this. You board a train with your friend. He understands you’re in enough pain that his carrying your bag makes a difference. But he suddenly realizes you’ve gotten onto the Quiet Ride Car, decides he’d rather be able to hold a conversation, and is immediately on his feet, beckoning, walking down the aisle, passing through one door and then another into the next car, and plopping onto a new seat, all on a moving train. A quick walk for him, an unspeakably risky scramble for you — but wouldn’t it be rude, or at least mildly anti-social, not to follow?
You’re food shopping and you need baking flour. It’s on the bottom shelf. The five-pound bag might as well be a 200-pound kettlebell. You linger with your cart there for a moment, feigning interest in the vanilla extracts, until someone friendly looking walks by.
“Excuse me, sir,” you say. “Can you please grab that bag of flour for me?” At age 31, this is still not as embarrassing as asking for carry-out service when you get to the register.
But imagine you’re shopping with a ticking time bomb in your cart. Can you get everything you need before it goes off? That’s how the average day feels with a body that’s often on the verge of revolt.
Hercules should’ve tried this
Take the tuna casserole lunch. At a nice little bar in center city. Not strenuous, right?
If you’re in serious pain, this is actually four separate herculean tasks:
- Sitting up
- Hearing what another person says
- Speaking coherently to him or her
People with serious chronic pain, particularly back pain, understand. In an orthopedist’s waiting room last year, I was chatting with another spinal patient. (In this scenario, when someone is friendly, talking about this stuff is commiseration, not nosiness.)
“So what happened to you?” I asked.
“I dropped a raisin and made the mistake of bending over to pick it up,” he said.
The chronic pain patient’s world is littered with these raisins. Choose carefully. Reach for the wrong raisin, and you’ll be in bed for four months. While you’re at it, avoid sneezing, laughing, and potholes. In other words, skip springtime, most internet videos, and Pennsylvania.
I was raised to worship the Lord Jesus Christ. Now, especially since I’m intolerant of opiates and steroids, I could erect altars to diazepam, ibuprofen, and hot baths.
On days when I can get out, I look healthy. I try to act the part, giving up seats at the front of the bus for elderly people or people with canes. Smiling. Breathing through one step at a time.
But, as long as we’re in TMI territory, this is what my leg looks like over a week after I boarded a bus and lost my balance before I could get to a seat.
Some of my doctors and even my friends have begun to refer to me as “disabled.” I suppose I am, on some days.
So do I mind if you ask? What do I have? A helluva lot of pain, that’s what. Now let’s get down to business.