My life changed in a matter of seconds, when in 2010 I sustained a serious spinal injury in a tree-cutting accident.
The pain was almost unbearable. For the first three months, I had to sit upright in a chair, day and night, unable to lie down or move much, aside from getting to the bathroom. I was prescribed medications, including an opioid. The pain was still severe. But even though the medicines didn’t take all the pain away, it was like having a knob that turned down the volume.
I’m more than a pain patient: I’m a mother, a grandmother, a wife, and worked in the nursing profession until long-term illness ended my career over 20 years ago. I’m also one of approximately 100 million people in the United States living with chronic pain. Too many of us have had the medications we need taken away. In my case, I was without access for a decade.
Tragically, the physical pain I face daily has been overshadowed by something far worse. Last year, my eldest daughter lost her life due to “acute drug toxicity” involving illicit fentanyl.
This is the story of how my family and I have been irreparably harmed by the drug war. So, let’s start at the beginning.
As healing progressed after my accident, I was able to lie down again. I could sleep a bit more and gradually returned to doing the things I love, like gardening, visiting with family and friends, attending community functions and traveling. For about two years, I took my prescribed opioids and maintained my quality of life.
Despite the frightening stories we’re too familiar with, most people who take opioid medicines use them as prescribed. We take them to manage our pain. We take them to live and work. Only a tiny
percentage of us ever experience either substance use disorder or overdose. While it’s true that some people started their use with prescription opioids before moving on to heroin or fentanyl, the data show that in most cases the pharmaceutical pills they took were not prescribed to them but instead were obtained through friends, family members or illicit sales.
The distortion of these realities did not happen overnight. The overdose crisis, which had already begun around the time of my accident, but has since escalated to unprecedented levels, was incorrectly labeled an “opioid epidemic.” (In fact, most deaths involve combinations of different substances.)
Moreover, in both medical and media circles we see the tendency to conflate addiction with physical dependence. The difference between the two is vital: Criteria for substance use disorder include, for example, using more than you wish to, continuing to use despite harms, or giving up important life activities because of your use. Most people who use opioids for pain experience the opposite: Their lives improve. Many medicines—like antidepressants or corticosteroids—can cause physical dependence; medication dependence in the absence of harms continues, wrongly, to be viewed as evidence of addiction.
My condition and care were stable. Despite this, my doctor, who was usually compassionate and kind, suddenly turned cold.
Armed with these misperceptions, the nation reacted to the “opioid epidemic” in predictable fashion. Leaders resorted to reactionary policies, feeding into a media fear campaign that demonized prescription opioids, leading in turn to more bad policies. We tried to arrest and further stigmatize our way out of a public health crisis—despite the devastating impact of such drug-war approaches on communities of color and others for generations.
I was just one of tens of millions of chronic pain patients to pay the price.
In 2012, my condition and care were stable. Despite this, my doctor, who was usually compassionate and kind, suddenly turned cold.
She came into the exam room one day, and without making eye-contact, stated that she was being monitored by the DEA. She began making it clear that she was now uncomfortable with continuing to prescribe me opioids. Things just got worse from there.
At one point she put me on an anticonvulsant called gabapentin, as she stated she wouldn’t prescribe an opioid alone for pain. She kept me on the gabapentin even though I was having serious adverse side effects. Around this time, she also began giving me frightening ultimatums: If I did not consent to steroid injections into my spine or invasive spinal surgery, she told me she would no longer prescribe the opioids that I relied on for my pain.
For me, taking oral medicine was preferable to the risks of surgery or epidural steroid injections, especially given my complex medical history with serious, chronic illness and rare infections. I fully understood the options available to me, and had researched them thoroughly. But my preferences counted for little as the DEA-led response to the “opioid epidemic” escalated. If you were someone like me, you would now need to sign what was called a pain contract.
For those not familiar, these contracts stipulate random drug testing for the duration of your pain care, to somehow prove you’re not “drug seeking” or selling your medicine. These contracts often stipulate random pill counts, where patients must show up the same day to verify that they haven’t taken any more or less of their medicine than prescribed. Bad or good pain days are not acceptable reasons for any deviation.
My doctor explicitly threatened that if I did not sign the pain contract, my medicines would be stopped immediately.
Most contracts state that only one doctor can prescribe pain medicine to you, even after surgery. You are made acutely aware that you’re under direct threat of care being discontinued for anything other than total compliance.
In 2013, under extreme duress, I signed the contract presented to me. My doctor explicitly threatened that if I did not sign it, my medicines would be stopped immediately. It felt like I was doing something wrong for wanting relief from my pain.
But pain contracts and threats weren’t enough to satisfy the anti-opioid outcry. Next came the prescription drug monitoring programs (PDMPs).
These databases to track prescribing now exist in every state. They’re said to have been implemented with the goals of preventing “doctor shopping” and shutting down “pill mills.” For the chronic pain patient however, they amount to prohibitive surveillance systems—a law enforcement dragnet that guarantees being treated with suspicion by medical professionals. We now encounter targeted discrimination and barriers to care in emergency rooms, for example—visits that for those of us with chronic health issues are all too necessary.
PDMPs have had a chilling effect on prescribing practices while doing nothing to prevent overdose deaths. What is a person seeking pharmaceutical opioids, but blocked by a PDMP, likely to do?
The answer may lie in statistics that show over 106,000 overdose deaths between 2021 and 2022. According to the CDCs own figures, deaths involving opioids have increased by 125 percent since 2013—the year I was made to sign a pain contract.
Despite the obvious fact that current approaches to the overdose crisis are harming millions, drug policies are still being hailed as a success. How often do we hear about the “success” of combatting the “opioid epidemic” because there are now fewer prescriptions dispensed?
After prescribing practices changed, my new normal became a cycle of medical trauma. I even found myself practicing what to say to avoid saying something “wrong.” Routine appointments and calling for monthly refills became anxiety-inducing ordeals. Will this be the day my doctor refuses to write me the prescription I depend on to function?
There were sideways glances, covert whispers by medical staff, discussions by pharmacists who called to verify every valid prescription I presented. There was an ever-increasing undercurrent of blatant hostility and contempt. I hate to admit that I initially avoided advocating for myself too strongly, for fear I would be pharmaceutically punished. Those fears weren’t unfounded.
I lost access to pain care altogether.
A few months after I signed the pain contract, my situation became untenable. When I continued to refuse surgery, my doctor accused me of not wanting to help myself. She also accused me of being “dependent” on my medicines, in that all-too-familiar conflation. I told her that having to be drug screened and scrutinized to somehow prove myself worthy to receive care made me feel criminalized. I was done with it.
Her reply was that if I wasn’t going to consent to spinal injections or surgery, or if I kept disagreeing openly with the practice’s policies, I would need to find a new doctor.
I walked out.
This decision left me without real options for finding a new prescriber, thanks to the policies I’d objected to being system-wide, and my limited health insurance. I lost access to pain care altogether.
My health and quality of life declined dramatically. I suffered from significantly increased daily pain. Left without needed medication, I now battle multiple, likely permanent, pain-induced health complications. The stress of a decade without pain care also caused my chronic illness, myalgic encephalomyelitis, to go from remitting/relapsing to a progressive phase.
Once functional and living my life with the help of opioid medication, I am now primarily housebound. Sometimes I can’t leave my bed for weeks. Isolated like this, I’ve lost both my health and irretrievable moments with loved ones. This decline has been a direct result of what I consider medical abuse.
But there was one thing I could do when I lost access: Embark on my journey into pain patient advocacy. I began making calls and writing articles about my experience. I started submitting formal complaints and speaking out online, where I found a group of people like me operating an advocacy campaign called Share Our Pain. I started opening up to friends and family, and tried to initiate conversations with elected officials.
It was in 2021 that I was officially labeled a “drug seeker” by certified mail.
I received very negative responses to most of my efforts. I faced derision, even from some chronic pain patients, and the personal attacks began. Some people told me that I must have done something wrong to be presented with a pain contract. I even faced accusations that I must be an “addict,” since I was vehemently against drug-testing policies. The attacks have been difficult to endure.
And the system still hadn’t finished with me. It was in 2021 that I was officially labeled a “drug seeker” by certified mail, and banned from care at a medical clinic in our town.
I had dared ask to continue taking a benzodiazepine that had been prescribed to me in the ER for severe vertigo, a new and debilitating symptom that began after a shingles infection.
The doctor concerned had repeatedly said that his hesitancy to prescribe was due to his “being watched”—not because he felt it wasn’t medically indicated. In the past, he said, he’d have prescribed the medicine gladly, with refills. But administrative and DEA oversight made him fear being targeted.
Many in the pain community have heard this refrain from doctors over and over: “It’s your medicine or my license.” We know what most choose.
At the time I was also undergoing tests to determine if I had breast cancer. I was left with challenging task of finding alternative care from my small, rural town. Eventually I found another doctor, and the lesion they thought might be cancer was ruled benign. The whole thing, for me, was yet another cycle of medical trauma.
It’s imperative to understand that the “drug seeker” label and alerts in the PDMP can stay with a patient forever, following them around in what’s known as a NARXcare score. Should we require emergency care or surgery, it can affect our access to needed medicines, causing those already vulnerable, sick or injured to face unnecessary pain and suffering.
All of this, for millions of us, because of the government’s crackdown on opioids amid the overdose crisis. That crisis is very real—created and greatly exacerbated by a host of disastrous policies.
As I said at the beginning, my family knows this first-hand.
In February 2022, I lost my beloved daughter, Desiree, to this government-made disaster. She had two children of her own, kids who will now grow up without their mom.
One of the many devastating things about this is that about two years before her death, my daughter had approached me and asked for my help. She wanted me to take care of my granddaughter for an extended time, so she could focus on recovery from her issues with alcohol and other drugs. She was also working on custody issues, and trying to get out of a toxic relationship.
I couldn’t help her. Without medication, my health, by that time, had deteriorated too much. I couldn’t even take care of myself, let alone a school-aged child. I was unable to even drive at that point.
I think my having to say no that day broke Desiree’s heart. I know it broke mine.
My daughter died due to her inability to get safe, effective, controlled medicines at a therapeutic dose from her prescriber.
Despite my inability to help, my daughter figured things out. She got into an inpatient detox/rehab, and was doing really well. We talked often, and she sounded more positive and hopeful than ever. In late 2021, she left the relationship she was in and moved into a women’s shelter. She had a new job and was trying to take care of her physical and mental health. But she was struggling day to day, due to severe PTSD and a debilitating panic disorder—issues she used to self-medicate with alcohol and prescription drugs, obtained primarily through friends.
The tragic irony? I had been so worried my daughter would lose her life due to alcohol. But in the end, she died due to her inability to get safe, effective, controlled medicines—in her case, benzodiazepines—at a therapeutic dose from her prescriber.
When she was unable to get the medicines she desperately needed, she resorted to the street supply. She obtained pills that she thought were Xanax from someone she knew. But they weren’t Xanax. They were counterfeit pills containing both alprazolam and fentanyl.
My daughter died alone. She was only 35. She died in a women’s shelter, a place she often referred to as her sanctuary. My loving, fierce, beautiful child was found unresponsive on the floor of her tiny room after she didn’t sign in at curfew. She had collapsed, unable to make it the few steps to the hall, right outside her door, where she could have gotten help.
For those who have some romanticized notion of a death due to drug toxicity being just peacefully going to sleep, that’s not what happens in real life. I will spare you the horrific details.
My family has been ripped apart. My heart is permanently shattered. Words cannot adequately convey the scope and devastation of what’s transpired since that sunny day we went tree cutting in 2010.
It means ending the drug war, which criminalizes, incarcerates and kills where we should care, support and heal.
We must reverse the disastrous practices and attitudes that have done this to not only my family, but countless others. If we actually want to save lives, we must transform drug policy in the United States. I hope I have shown you why.
If we are truly intent on saving lives, it means ending the drug war, which criminalizes, incarcerates and kills where we should care, support and heal. It means spreading harm reduction provisions and practices—both in medicince and in regard to nonmedical drug use—prioritizing keeping people alive and healthy.
It means establishing bodily and prescribing autonomy in the practice of medicine, to allow people to make choices through informed consent, without stigma—starting by getting law enforcement out of the PDMPs, and out of the practice of medicine altogether. It also means establishing access, for everyone, to the individualized treatments we need to survive and thrive—the foundation of patient centered-care.
All of this, and the rational, compassionate discourse about drugs that we desperately need, will require political courage from our leaders. Unfortunately, I don’t see much of that happening from where I’m standing.
Photograph by Kathea Pinto via Flickr/Creative Commons 2.0