“I can’t imagine what that’s like”: Notes for everyone who’s curious about chronic pain

“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?”

An MRI of my lumbar spine. Let's play Spot the Bad Discs.
An MRI of my lumbar spine. Let’s play Spot the Bad Discs.

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.

Oh florescent seals of my youth.
Oh you florescent seals of my youth.

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).

Haven't tried a Wawa milkshake? DON'T, unless you want to get hooked for life. Don't have Wawa in your neck of the woods? I'm sorry.
Haven’t tried a Wawa milkshake? DON’T, unless you want to get hooked for life. Don’t have Wawa in your neck of the woods? I’m sorry.

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?

Wrong.

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
  • Eating

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.

It's true if it's on the internet.
It’s true if it’s on the internet.

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.

No, I don't even remember exactly how it happened.
No, I don’t even remember exactly how it happened.

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.

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26 Comments

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  1. Shit, Lain. Shit, shit, shit. Love you.

    Yes to the chronic pain, but it was only acute for 9 months or so and on-and-off at other points of my life. Whoever decided this was a good idea for you, I wanna beat them up.

  2. I am not nosy. I am interested in you. I am- putting it at its worst, an emotional vampire, wanting someone to talk about feelings so I can sympathise– and at best it’s that I want even on first meeting to be feeling together with someone. Yes I know not everyone is like that. Some seem to take it personally.

    I suppose at a business meeting someone might be checking you out, questioning whether you are capable, and someone may indeed be nosy, but not all of us.

    I have had that conversation. Dinner with colleagues. “Why aren’t you drinking? Go on, have a drink! It’s Christmas!” I was 27, I should have had more tact, perhaps. But now it is not exactly lack of tact.

    • Yes, maybe it’s just a case of natural human interest. But if people want to connect on an emotional level, there are plenty of ways to do that without inquiring after someone’s medical history (I know this for sure, because I conduct interviews all the time). There are mutually appropriate and comfortable ways to open up, and yes, this may vary from person to person. Thanks as always for weighing in!

  3. It’s amazing how much you accomplish under the haze of chronic pain. You should feel good about that. I always hope that one day there will be a cure for your afflictions or a treatment that will take away the misery. xox

  4. In re the altars to LJC, diazepam, baths, etc–forget not Caramel Cone. xo

  5. Don’t be ashamed of a lingering fondness for florescent seals! I have a Yoda bobble head. And I’m proud of it.

  6. Spinal stenosis, and diabetic neuropathy. On a high note, once the two discs (L4 & L5) completely disintegrated, the pain changed. From sharp and acute, to dull and chronic. What’s particularly fascinating are the perpetual ice picks stabbing the top of my right foot, which intensifies with every step, and each time I bend over. Squatting became impossible several years ago, before the RA diagnosis. I put it to my doctors this way: “Are you aware that you have legs?” In other words, how often during your daily routine do you stop to think about your legs? For me, they are all I can think about, because they hurt. It would be lovely to have a day when I was completely oblivious to the fact they exist. I understand. It is very difficult to focus and concentrate on other things. I hope you have some relief, soon.

    • So sorry about your experience. My back pain seems to run the gamut — sometimes it’s just a god-awful ache, sometimes it feels like electric shocks in my muscles, and sometimes there are just spasms that I’ve described like a blowtorch to the spine.

      My legs mostly are ok, thank goodness, unless the fibro flares up real bad, or a cold, wet storm is coming.

      Focusing can be quite a beast when the pain is bad, but so far I’m thankful to be able to do it most of the time, when I need to. Distraction works better than painkillers, I find. Hope you get some relief, too.

      • Thanks, Alaina. You’re right, distraction works wonders. It’s one of the reasons I’ve immersed myself into the passion of photography. It helps get me moving; out of the house, and out of my head. 😀

      • I guess a lot of people would assume that a writer spends most of her time in her own head, but in my case, I feel like it lets me get OUT of my head, like you say, and at least out of this dang body. When I feel like I have nothing left, I focus on the next deadline. I know photography is a fascinating field, too.

      • I’m not really sure what people think about writers, I have the utmost respect. I consider myself a pretend writer. David Sedaris sums it up perfectly for me, on his writing ritual: “I only know what I’m feeling on paper. I can only ‘tame’ it, I suppose, on paper. And so I sit down every morning, and I make sense of the world – and I don’t let things get in the way.” Except, I still can’t make sense of the world, no matter how much I write. And that’s okay.
        Incidentally, I enjoy our conversations. Thank you.

      • Oh people have all kinds of ideas about writers. That’s ok, because writers have all kinds of ideas about other people. That’s a nice reflection from Sedaris, one of my faves. Very true that writing feels like the only way I really ever process anything, whether or not anyone else reads it. And yes, the world doesn’t make much sense.

        Nice talking to you as well.

      • I’d love to read a blog post about what people think about writers, and particularly, what writers think about other people. I bet it would be insightful, and hilarious!

      • Well I couldn’t speak for all writers. But there’s enough to say on my own behalf. Good idea.

      • Oh, I did mean a blog post from you!

      • Alrighty then. We’ll see what we can do.

      • Cool! I’m looking forward to it!!

  7. Thanks for continually giving me things to think about from a different perspective!

  8. Thought you might be interested in my blog as it addresses some common interests.- Michael Langan, MD

    http://disruptedphysician.com/blog/

  9. Alaina,

    Ilene Wilder directed me to your site and wow, this is the first piece that I’m reading. You are SO right about the dangerous raisins everywhere. I know well the invisible spiky cage that has clamped onto you and won’t let go (I’ve had two runs, each lasting about six years each, though now I’m pain free.) I hope that people can take away from your phenomenally spot-on piece that they could help you most by accepting you at your word, offering to help when you need it, and keeping up hope that you’ll find the way to health. (I went through 45+ doctors in six years for the second issue, and finally found someone who could cure me at HUP. I know it’s hard, but I wish you the strength to keep seeking out help.)
    –Marina

    • Thanks for sharing your story. It’s good to know someone else came out the other side of serious pain with the help of the right doctor. I’m embarking with a new one myself, now, which is always pretty nerve-wracking. Will she be able to help me, or will it be another dead end, and more years of pain?

      I hope you stay pain-free!

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