Tomorrow, my wife and I are boarding a plane that's the first step to flying to Europe. We should be excited, and in many ways we are, but hanging over me is a gnawing worry: How will I be treated by customs when arriving with my pain medication?
I've prepared the best I can—I hope. For the Schedule 1 meds, I'm bringing the original bottles and two signed documents by my primary care provider, one a list of my medications, the other a note describing my narcotic prescription.
Additionally, I'm bringing two over-the-counter backups, ibuprofen and Tiger Balm patches, as well as any other relief options in case I have a flare-up.
I'm "Mister Worry About Everything," and hopefully I'm overpreparing and worrying for nothing. But ask anybody living with chronic pain about living on the edge of suspicion; each refill brings fear. Add in flying, crossing a border, and seeing a new doctor: They all bring the same terrifying reality that somebody in power determines if our suffering doesn't qualify anymore.
That's the real luggage I carry, weighing far more than any suitcase.
And I am not alone.
Here are four more contributions from readers sharing their struggles with an invisible enemy.
Anonymous: A Broken Back, A Fragile Life
In 2001, an injury changed everything.
“I broke my thoracic spine in 4 places. The chiropractor looked like he saw a ghost when he walked out of the X-ray room. There was nothing he could do because the injury was too old and severe. A pain specialist told me I’d have to just live with it.”
For a year, he lived with pain, even while working to provide for his family. Surgeons delayed, even as a shard of bone pressed against his spinal cord, “the shape of a knife.”
“They said if I even turned wrong, I would be paralyzed from the chest down.”
Surgery eventually came, but it was brutal. A clamp slipped, he nearly bled out, and neuropathy never went away. Fifteen years later, his life is a rotation of Cleveland Clinic appointments, nerve-burning procedures, and a minimal opioid dose that keeps him functioning.
“I live in constant fear of losing my doctor and my pain meds with him… I’ve already gone off the meds for 3 months as a trial. It rendered me completely bedridden and caused my A1C and blood pressure to skyrocket.”
His life today is narrowed to a single chair and an injury bed, his wife working full time to carry the load.
Texanist: From Miracle to Chronic Pain
For one Texas man, the story began with a miracle. In 2006, at just thirty-six, he was told he needed a liver transplant. He was serving as COO of the Choctaw Nation Health System when the call came.
“They provided the tribal plane in the middle of the night to get me to Oklahoma City… A complete miracle from above. I was recovering well enough to do a 5k walk four-and-a-half weeks later.”
But chronic pain soon entered the story. Over the years, fractures, compressions, and surgeries left him with pain that never relents.
“It’s a constant 3–4 most of the time, and routinely goes to 8–9 plus. I just deal with it the best I can, which is to say poorly when it’s awful.”
He tried OxyContin, fentanyl patches, and Xanax. The side effects were harsh, but worse was how the system failed him. In 2014, when a refill fell over Thanksgiving, his clinic ignored his preparations and left him to go cold turkey.
“I ran out of meds over the holiday and went cold turkey off everything. Their response, the following Tuesday, when I finally got through, was to fire me as a patient for raising a stink about it. No accountability whatsoever, and it was my first experience being ‘cancelled.’”
Today, he avoids opioids when possible, relying on hemp, prayer, and sheer endurance. But Texas lawmakers are moving to outlaw hemp products, too.
“It’s frustrating because you’re definitely treated like a criminal and a drug seeker… So when they outlaw hemp, it’ll probably be time to move. If I survive that long.”
From a miracle transplant to being treated as a criminal for trying to manage pain, his story captures both the grace of survival and the cruelty of a system that doesn’t care how survival feels.
Tstein: Judged by a Smoker’s Bias
For more than thirty years, Tstein has fought her own body: Chronic neck and back pain, arthritis, stenosis, and even a fractured vertebra. Hydrocodone offered some relief, but she used it carefully.
“I am acutely aware of its addictive properties. I was extremely judicious with dosing, only taking 1/2 tablet when in dire need. I’m still working off a prescription from 2023.”
Her caution didn’t protect her. When her longtime pain doctor stopped prescribing, the next doctor she saw treated her with contempt.
“The doctor refused to prescribe long-term because I am a smoker and drink one glass of red wine nightly. He claimed this showed an addictive personality. He even threatened urine tests to prove I had quit.”
She filed a complaint. Nothing changed.
“Now I find myself in a position where I cannot get the drug I need to manage my chronic and at times, debilitating pain. Constantly fighting pain is exhausting, and one loses interest in the pleasures of everyday living.”
Her story is one more reminder that suspicion has replaced compassion.
BD: Torn Apart, Dismissed
DB lived for nearly two decades with pain most of us can’t imagine, a ligature from a botched surgery literally tearing his body apart.
“Not only did I suffer the pain and humiliation of feces seeping uncontrolled out of my belly, but gastric acids burned and left my skin bloody and scarred… at times I was sure I was going to stroke.”
He begged for help. Doctors minimized him. At one point, a wire poking through his skin was dismissed as a gray hair.
“I fired the ‘doctor’ and, with the help of a competent nurse, finally got examined by a surgeon. After a week of being ignored, I finally managed to get a surgeon to remove the portion of the ligature that was poking through my skin.”
It took twenty years to get the surgery he needed. Since then, he hasn’t touched a Tylenol. His story lays bare the cruelty of a system more interested in protecting him from pills than from his own failing body.
C and His Wife: Saved by Relief
C’s wife was diagnosed with MS at twenty-five. For more than a decade, she lived with the disease, and then the pain began: searing, constant, unbearable.
“By the age of 37–38, she began experiencing intractable pain in her neck and back… later found to be caused by deterioration in her cervical vertebrae.”
For two years, she lived like this, misdiagnosed, dismissed. What kept her alive?
“We are convinced that opioids, most especially the fentanyl patch, all properly prescribed by a palliative care clinic, saved her from taking her own life because the pain simply would not stop.”
Eventually, surgery corrected the damage, but those two years are etched into C's memory. For him, the lesson is simple: opioids are not the villain.
In the right hands, they save lives.
Jim: A Warning from Tramadol
Not every story is about high doses and lifelong treatment. Jim’s injury seemed simple: a broken hand from a power drill accident.
“The ER Doc gave me a several-week supply of Tramadol, and told me to take it until it was gone. I told him I didn’t feel much pain… He said to take it anyway. So I did.”
The pain was minor. The side effects were not.
“About 10 days in, I started getting the dark thoughts… Both symptoms started gradually, they got irritating, and when I re-read the side effects, I realized I needed to stop.”
He quit cold turkey and never looked back. For Jim, the warning is clear: Pain management is not one-size-fits-all, and even the so-called “weaker” medications carry risks if prescribed carelessly.
Final Thoughts
While packing for Europe, I keep going back to the small, orange bottles in my carry-on. They may just be pills to some customs officials, but to me, they're the difference between walking and collapsing, between exploring Krakow or being trapped in a hotel bed.
Think of the people who shared their stories here: Anonymous, Texanist, Toby, BD, C, and Jim all carry their own bottles, scars, and the fear of losing access to the medicine making life livable.
For me, it is about a flight across the ocean; for them, it is about surviving each day, and for all of us, it is about whether compassion has a place left in medicine.
Until the system stops treating us like suspects, the real weight we carry isn't measured in pounds or kilos.
But in fear.
Got a Story? I Want to Hear It.
I realize this series might be getting old to some, but to others, it's a chance to unload the fear and pain that's locked up inside.
If you live with chronic pain and feel ignored, share your story. I'm afraid I can do nothing but share a series like this one. These are small steps, which I hope grow into leaps.
And if you’d prefer to stay anonymous, that’s absolutely fine. All of us are people who didn’t ask for pain but live with it every day.
You can send your story by clicking the “TIPS” button and including your email address so I can follow up if needed. Please include my name at the beginning of your message so I can be sure to receive it.
Please, please remember: you’re not alone.
It’s time they knew that, too.
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