I considered hanging a printout of my upcoming pain management appointments on my kitchen wall, but didn’t out of fear. What would someone think if they saw it? What would they assume? I live forty minutes from Huntington, West Virginia—and I haven’t always been able to get the care I need. Because my home in Appalachia? It’s ground zero for the opioid crisis.
For years, I lived with endometriosis and myofascial pain syndrome. My endometriosis-related pain has almost entirely disappeared after two surgeries and treatment with the chemotherapy drug, Lupron. The myofascial pain syndrome remains under control with physical therapy, massage, and exercise. But my pain-management will be lifelong.
So many in my state struggle with addiction; I’ve been accused of it regularly, even though I don’t take opioids for my pain. As a chronic pain patient in West Virginia, I had to constantly defend myself to those who were supposed to help me.
More than 42,000 overdose deaths involved opioids in 2016, according to the U.S. Centers for Disease Control and Prevention. For years, drugmakers pumped extraordinary amounts of opioid medications into the state of West Virginia, and manufacturers and doctors running “pill mill” clinics made a fortune exploiting coal miners with disabilities and others suffering from chronic pain. According to a congressional committee investigating the opioid crisis, as reported by the Charleston Gazette-Mail: “Over the past decade, out-of-state drug companies shipped 20.8 million prescription painkillers to two pharmacies four blocks apart in [Williamson,] a Southern West Virginia town with 2,900 people.”
I began complaining about pain in 2012. That year, my endometriosis pain began as hip and lower back pain, eventually spreading to my abdomen and sciatic nerve. At the same time, after a car accident, I developed retrolisthesis in my cervical spine: the backwards slippage of a vertebra, leading to neck pain and arm numbness.
Both my endometriosis and neck pain went undiagnosed for years. Ignored, minimized, and left untreated, the pain became constant, resulting in myofascial pain syndrome, which requires lifelong management. I didn’t get the surgery that solved nearly all my endometriosis pain until 2016, and didn’t receive help for myofascial pain syndrome until 2017.
Local doctors found it hard to believe I could be suffering so much. I’m 39 and slim. I look healthy. But I had many emergency room trips and many years of searching for help and not finding it. Physicians went to a default explanation: It must be drugs.
Each time a doctor decided I was a drug-seeker, refused to run diagnostic tests, and sent me to another doctor who did the same, I was shoved closer and closer to the edge of giving up. I’ve cried more than once in an emergency room or doctor’s office. Bursting into tears doesn’t help a woman’s credibility.
The pain was costing me my life. I didn’t date for years. I couldn’t keep plans with friends; I was always too exhausted and depressed from being in constant pain. I couldn’t work. I wasn’t living but existing: a shell of my former self, pacing around the house at night when the pain and hopelessness was too much to let me sleep.
One ER doctor asked me point blank if I was an addict. I had many who didn’t ask, but their nonchalance when I said, “I can’t live like this much longer” told me that’s what they believed.
I got another hint of what these doctors might be thinking in April of 2017. I was scheduled to do a reading in Parkersburg, West Virginia, with other West Virginia authors, all contributors to a book from West Virginia University Press. As my niece and I were about to begin our drive, I became strangely ill. After half an hour of sudden nausea and weakness, I felt confused and incoherent. It was then I recalled the advice of my mother, a registered nurse: “If you ever feel like you might pass out, lay down right where you’re standing so you don’t fall and hurt yourself.”
I knew I was about to lose consciousness, and so I lay down at the top of the stairs—the most inconvenient place in the house for the EMTs—and quietly instructed my niece to call 911. She was cool and calm as could be.
When anyone in this city, specifically someone young and healthy-looking, is lethargic and incoherent, an EMT’s first guess is a heroin overdose. I knew it would be.
I could hear everyone around me talking as I drifted in and out of consciousness. I kept trying to say, “I’m not a drug user.” I knew they were considering it, and I’ve never been so scared in my life. I had terrifying thoughts—what if they gave me Narcan?—then abdominal and pelvic pain made me come to. I screamed for nurses.
Eventually, I was catheterized and had nearly 1,500 milliliters of urine drained from my bladder. I had acute urinary retention, a serious and dangerous emergency, which can have multiple causes, including side effects from medications. The tissue from endometriosis I’ve had removed from my bladder and my interstitial cystitis could also be causes. But one doctor insisted the condition arose from long-term opioid use.
I didn’t even have the strength to argue that time.
In May of this year, Walmart announced an initiative they claim will help “curb opioid abuse and misuse.” According to their website, Walmart and Sam’s Club will “restrict opioid fill limit up to seven days nationwide [and] require e-prescriptions for opioids by 2020.” In February 2018, Purdue Pharma said their sales representatives would no longer visit doctor’s offices to pitch their pain drugs, and that they were cutting their sales force.
Purdue, OxyContin’s manufacturer, is being sued for allegedly misrepresenting their drugs as safe and less addictive than other narcotics.
Numerous other lawsuits have named multiple drug companies. But the focus seems to be on suing companies long after the damage has been done. Restricting pill access hasn’t stopped the rise in heroin use and, some argue, may even contribute to addiction.
For years, I looked for an accurate diagnosis for my pain, not drugs. Time and time again, yet another doctor failed to listen, failed to spend more than five minutes with me, or refused to run diagnostic tests.
Surgery eventually resolved most of the pain I endured. My remaining issues are being dealt with without narcotics. Now I see a pain management physician once a month. I receive anti-inflammatory drug injections in the muscles around my cervical spine and upper back. I am not prescribed opioids. I go to physical therapy regularly, exercise, and get massage therapy.
I didn’t hang up my pain management appointment sheet, because I feared what EMTs might think if I need them again and I am unable to speak. I know what they’d suspect if they saw a list of appointments at a “pain management clinic” hanging on the wall. What if it happens again, but next time, I’m alone and can’t tell them not to inject me with Narcan?
What if they kill me by accident?
Although unlikely, what happened that day could happen to me again and any time I’m alone. There are so many people suffering in a variety of ways as a result of opioids. While my own pain has been controlled, the opioid crisis still rages: No one is safe.
I write my pain management appointments down in my calendar because certainly, in West Virginia, it’s too dangerous to hang them on the wall.