The Chronic Pain Performance: The Final Act

There is something strange I have to admit in an essay about chronic pain.

Sometimes I feel lucky.

I know. That’s a hell of a word to use when you’re talking about chronic pain.

Physical chronic pain is actually relatively new territory for me. It started about six or seven years ago. For the first few years, I didn’t have much in the way of answers, let alone relief.

And here’s the ironic part.

It was my psychiatrist who helped set things in motion.

She had listened to me talk about my physical pain. Really listened. And because she had previously worked as a nurse practitioner in a clinical setting, those complaints didn’t simply disappear into the psychiatric bucket once our appointment was over.

She remembered them.

Then she saw something in my blood work that made her stop.

My alkaline phosphatase was markedly elevated.

Wait. Why is your alkaline phosphatase this high?

She connected that abnormal result with the pain I’d been telling her about. That question helped send me down the road toward discovering a possible connection to Paget’s disease of bone, a condition involving abnormal bone remodeling that can cause bone and joint pain.

There’s something almost absurdly poetic about that.

Spend enough time listening to chronic pain patients and you’ll hear story after story about people being told their pain might be ”all in their head.”

The scans don’t explain it. The tests aren’t conclusive. The doctor can’t find the source. So maybe it’s anxiety. Maybe it’s depression. Maybe it’s stress. Some patients eventually find themselves sitting in front of a psychiatrist or therapist because nobody has found a satisfactory physical explanation for pain they know damn well they’re feeling.

And I’m not arguing that psychology has nothing to do with pain. The brain and body aren’t separate machines. Mental health can affect how we experience pain, just as living in pain day after day can absolutely wreck your mental health.

But there’s an enormous difference between saying the brain influences pain and saying the pain isn’t real.

And there’s another distinction we desperately need to remember:

”We haven’t found the cause” is not the same sentence as “there is no cause.”

A normal test doesn’t mean someone isn’t hurting. An unexplained symptom isn’t imaginary. And having a psychiatric diagnosis shouldn’t automatically turn every physical complaint into a psychological one.

In my case, of all people, it was my psychiatrist who believed what I was telling her.

She listened.

She remembered.

She connected the dots.

The doctor treating my mind was one of the people who finally pointed everyone back toward my body.

Maybe before deciding someone’s pain is all in their head, we should spend a little more time listening to what they’re actually telling us.

The Lucky One

So back to that uncomfortable word.

Lucky.

Over the past several years, I’ve gotten to know people living with chronic pain, particularly in online groups and communities. And some of their stories scare the hell out of me.

I’ve heard from people who went into spinal surgery hoping to finally get their lives back and came out in worse pain than they started with.

People who’ve had epidurals go wrong.

People who’ve endured procedure after procedure because each one was supposed to be the thing that finally helped.

And then there are the stories that bother me the most.

People who’ve spent years with a pain doctor who knew them, knew their history, knew what worked and what didn’t, and prescribed medication that adequately controlled their pain.

And then one day, everything changed.

The medication was cut in half.

Or cut to a third.

Sometimes after years of stability.

And I keep coming back to the same obvious question:

What is this person supposed to do now?

Their disease didn’t disappear. Their damaged spine didn’t repair itself overnight. Their pain didn’t get the memo that prescribing philosophies had changed.

That’s when I look at my own situation and realize that, in some ways, I’ve been fortunate.

But chronic pain isn’t a competition.

There isn’t one person whose pain represents everyone else’s. My seven isn’t necessarily your seven. Someone else’s unbearable might be something I’ve never experienced, while something I live with every day might bring another person to their knees.

There is no gold medal for suffering.

Nobody wins chronic pain.

So when I say I’m lucky, I’m not minimizing my own pain or ranking it against anybody else’s.

I’m simply acknowledging that I’ve found something that helps.

My pain can get bad.

Really bad.

But most of the time, a relatively small dose of an opioid keeps it controlled enough that I can function.

Not pain-free.

Not magically cured.

Functional.

And maybe that’s the word we’ve somehow lost in this entire argument about treating chronic pain.

My medication is a big part of what keeps me out of a wheelchair most of the time.

It helps me get up. Get out. Write. Take care of the things and people I need to take care of. Participate in my own life.

Without adequate pain control, my world gets smaller very quickly.

That’s what adequate pain treatment gives me.

Not euphoria.

Not some blissful, pain-free existence.

A larger world.

The medication doesn’t erase my pain. It gives me enough distance from it to have a life outside of it.

Why isn’t ”this treatment helps this person function” considered a success?

Of course opioids carry risks. They need to be prescribed responsibly, and they aren’t appropriate for everyone.

But this needs to be said:

We are not addicts simply because we take an opioid for chronic pain.

Physical dependence can happen with long-term opioid therapy. Addiction can happen too. Those risks are real. But taking a prescribed medication every day because it allows you to function does not, by itself, make you an addict.

Somewhere during the response to the opioid crisis, that distinction got dangerously blurred.

The opioid crisis was real. People died. Families were destroyed. Prescribing practices needed to change.

But the pendulum swung so hard in the other direction that chronic pain patients got hit by it.

People who had been stable on medication for years suddenly found themselves being tapered or cut off. Patients became afraid to ask for the medication that helped them because they didn’t want to be labeled “drug-seeking.” Doctors became afraid to prescribe it. Pharmacists were put in increasingly difficult positions when filling it.

And caught in the middle were people who were still in pain.

We responded to one crisis and, in some ways, created another.

There has to be room between ”hand opioids out without enough caution” and ”nobody with chronic pain should receive them.”

There has to be room for individual treatment, medical judgment and, most importantly, the patient.

Because we’re talking about lives.

And somewhere in all of this, I think we’ve gotten so obsessed with the treatment that we’ve stopped looking at the person being treated.

The Final Act

Back in the beginning, I wanted someone to say:

”Tell me your story.”

Not “Where does it hurt?”

Not “On a scale of one to ten?”

Not “What procedures have you tried?”

Not “Have you considered another injection?”

Just:

Tell me your story.

Because the story was always bigger than the pain.

It was about what the pain took away.

What treatment gave back.

The appointments. The procedures. The skepticism. The injections. The medications. The waiting rooms.

The little calculations you make every day about how far you can walk. How long you can stand. Whether you can make it through the grocery store. Whether you can drive today. Whether you’re going to pay for doing too much yesterday.

Whether today is going to be a walking day or a wheelchair day.

That’s the part a number on a pain scale can never tell you.

And somewhere along the way, after all the appointments and procedures and explaining and defending and proving, I said:

I should receive a standing ovation.

Maybe I was wrong.

I don’t want a standing ovation.

I don’t want applause for enduring another procedure.

I don’t want a medal for getting out of bed when it hurts.

I don’t want congratulations for learning how to smile while my body is screaming at me.

And I sure as hell don’t want to keep auditioning for the role of Patient Deserving of Pain Relief.

I just want to live.

That’s it.

I want enough relief to get out of the chair.

To walk when I can.

To drive.

To write.

To take care of the people I love.

To have days when pain is something happening in the background instead of the narrator of my entire life.

I don’t need a cure to call that a success.

I don’t even need zero pain.

I need enough relief to have a life outside of it.

So maybe this really is the final act of The Chronic Pain Performance.

Not because the pain is over.

Not because I’ve been cured.

And certainly not because I’ve finally figured any of this out.

It’s the final act because I’m tired of performing.

I’ve told you my story.

I’ve taken my bow.

You can keep the standing ovation.

Just believe me.

*Curtain.*