The author in the hospital in 2013 just before her high-dose chemotherapy began.
I don't like to talk about it. During the opioid epidemic, in order to survive, I needed high doses of these medications that were killing hundreds of thousands of people.
I have a rare disease called sarcoidosis. For 12 long years, it attacked parts of my brain, causing episodes of total blindness and vertigo so intense I would fall over when I got out of bed. Far worse was the pain it unleashed in my head.
This was pain that knifed and throbbed ― that consumed my life. Pain that would cause me to vomit repeatedly, long after my stomach was empty. Pain that left me curled in the fetal position, holding my head. Pain that kept me from sleeping for days and would not abate.
My son was a young child during the worst of these years. OxyContin pills and Fentanyl patches made it possible for me to function at all. Without these medications, there were few days I was able to leave my bed - to have a family dinner, to see my son in his kindergarten play, to sit upright and have a conversation with my husband, Jay.
I was one of the millions of Americans who needed high doses of opioids while unscrupulous pharmaceutical companies lied and encouraged doctors to over-prescribe OxyContin, while "pill mills" distributed these addictive medications far and wide, and while illegally produced Fentanyl found its way into street drugs like heroin. More than 932,000 Americans have died of opioid overdoses since 1999. This is a tragedy.
The author and her son in 2003. "This is shortly before I got diagnosed with sarcoidosis," she writes.
In response, in 2016, the Centers for Disease Control (CDC) issued guidelines recommending generic maximum doses for all patients, regardless of their illness or their tolerance to the medications. Recently, the CDC has walked back some of those guidelines, but the Drug Enforcement Agency continues to prosecute physicians they believe are over-prescribing narcotics. Here in Montana, several doctors lost have their jobs and/or their medical licenses for "over-prescribing" to pain patients, including those with terminal cancer.
Meanwhile, some state legislatures have set their own restrictions on opioid prescriptions. In Ohio, for instance, a doctor is allowed to prescribe only seven days of narcotic pain medicine, whether it's for a double mastectomy or pulled wisdom teeth. All these changes have meant it's more difficult for pain patients to find doctors willing to treat them and prescribe opioids.
While all this was unfolding, I was living with pain I couldn't bear. I didn't want to need these pills or patches. I was a former national class athlete. I prided myself on being tough and not complaining - even during the five years I got high-dose chemotherapy every other week to treat my underlying disease, and even when I had to crawl on my hands and knees down the stairs to have a family dinner.
But no fighting spirit alone could have kept me alive for the many years I lived day in and out with silent ordnance exploding in my head. I couldn't work, think, drive, sleep or move.
I was fortunate to have health insurance that allowed me to see an out-of-state physician who specialized in my disease. It was this doctor (and then two specialists after him) who recommended OxyContin for the inflammation in my cranial nerves that caused my unrelenting pain.
The author in the hospital with her son in 2011. "The neurosarcoidosis would sometimes get so out of control, I required hospitalizations, sometimes for two or three months at a time," she writes. "There aren't many photos of me in the hospital because these were such terrible times. It was extremely hard on my son when I disappeared into a place he feared and hated going."
Even though I had a medical team who made my disease their life's work by advocating for me, getting prescriptions filled was often an ordeal. Nearly every month we had to fight with the insurance company, which would wait until the last possible moment to fill a prescription. Jay spent many Fridays just before 5 p.m. wheedling and yelling with bureaucrats to approve medication my doctor wanted me to take. (Without insurance, each prescription would have cost thousands of dollars we couldn't afford.)
Every so often, the insurance company would summon Jay and me to their offices. We'd meet with a nurse who'd tell me to try relaxation and yoga instead of medication - as if I hadn't already tried. Jay and I would say a thousand versions of "I'm in pain, not an addict," and pull out the letters from doctors attesting to this. But every meeting ended with us not knowing what would happen the next month. Jay even brought in photos of me "before" narcotics (hospitalized, in bed, curled away from light and sound) and "after" (baking pumpkin bread with my son in the kitchen).
It never stopped. I also had forced visits with psychiatrists to assess whether I was an addict. They said I wasn't. Still, my doctor got a lot of pressure because of me. I don't know how many hours he spent on the phone justifying my treatment.
I lived in a constant stew of shame for needing these medications, and I feared that I'd lose them and the small life I'd scratched out next to the pain. I raged at how difficult this all was.
The author in 2013 during chemotherapy. "When nothing else was working (including low dose chemo every other week) to treat the inflammation in my brainstem and cranial nerves, the doctors tried high dose Cytoxan (a chemotherapy also used for breast cancer) for months," she writes. "I included this photo because I was able to sit for a meal at our kitchen table thanks to some pain relief. I still felt like total crap, but showing up for my family as much as possible was important to me."
Three years ago, I improved. My doctors aren't sure why the sarcoidosis stopped attacking my nervous system. The disease is now more active in my heart, causing potential fatal arrhythmias, but I have a defibrillator to regulate these. Without the rampant inflammation in my brain stem and cranial nerves, I am in much less pain. Under the guidance of a physician, I was able to taper off the pills and patches that once made my life livable. But the disease could return to my brain - or any other organ system - and once again I'd need pain management.
What if I still needed them - especially at my highest doses? What if my sarcoidosis hadn't moved from attacking my brain to damaging my heart? I know legitimate pain patients whose doctors felt they had no choice but to cut their narcotics by 75% or more overnight, or completely drop them as patients.
I can imagine the violence this withdrawal would cause. Even with a slow and supervised taper, I dealt with minor withdrawal symptoms with each drop in dose - diarrhea, anxiety, rebound pain, a runny nose and insomnia.
I can also imagine the violence of the pain returning ― unfettered and unending.
Since I like to think of myself as tough, it's difficult for me to acknowledge that I'm not sure I would have survived without opioids. But it's real. How many years could I hang on confined to bed, with the pain obliterating my life? How long until I needed to stop it, or choose to stop it? These are not things to say in polite company.
If the strategies we're following actually saved lives and prevented overdoses, the ordeal pain patients go through would make sense. But they haven't. Although opioid prescriptions have fallen to 1993 levels, overdose deaths from heroin and illegally produced Fentanyl continue. Studies that parse CDC data found "no evidence of correlation between the number of opioids prescribed and the non-medical use of opioids or of opioid addiction."
In other words, making life a living hell for pain patients isn't now addressing overdose deaths caused by illicitly manufactured synthetic opioids like Fentanyl.
The author cross-country skiing with her husband Jay, in January 2023. "I've been able to start cross-country skiing again, after my health started improving in 2019," she writes. "I never dreamed I'd be back on skis. I didn't want to be on all these narcotics. When I felt better, I tapered off the drugs and have been reclaiming as many pieces of myself as I can, though I still have health issues to deal with and manage."
An estimated 50 million American suffer from chronic pain. Five million of them rely on narcotics to function because they are ill. Exact numbers are hard to come by, but suicide rates are highly elevated among pain patients who cannot get the medications they need. I understand this.
It's easy to set hard caps on paper about how many pills a doctor can prescribe. It's a lot harder to address the constellation of issues that lead people to illegally buy and use narcotics. The two aren't necessarily linked, but we continue to behave as if they are.
Think of all the people who need pain medicine - those with chronic and incurable diseases, those with cancer or ALS (or ones like me with diseases you've never heard of), and veterans with chronic health issues. It seems as criminal to under-prescribe to these people, as it was to over-prescribe.
I hope my good health persists, and that I can continue living without opioids. But my specialist told me it's not a question of if I'll have another neurological flare-up but when. How will I survive when that happens? What will I do?
I don't know. And that's terrifying.
Rebecca Stanfel is a freelance writer who lives in Helena, Montana.
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