I have an aversion to discussing it, but I must address the unfortunate reality of the opioid epidemic that I, among countless others, have been impacted by. You see, I suffer from a rare condition known as sarcoidosis. This debilitating disease ravaged my brain for a painful 12 years, leaving me blind and dizzy, and causing excruciating headaches. My life was consumed by this agonizing pain, which often led to vomiting, sleepless nights, and an inability to function. During this time, OxyContin and Fentanyl became my lifelines, allowing me to maintain some semblance of normalcy. Without these medications, everyday activities, such as enjoying a family dinner or witnessing my son’s kindergarten play, were out of reach.
Unfortunately, the opioid crisis was fueled by deceitful pharmaceutical companies who urged doctors to overprescribe OxyContin, and so-called “pill mills” that distributed addictive medications without consideration for their devastating consequences. Illegally produced Fentanyl infiltrated street drugs like heroin, leading to a staggering number of opioid-related deaths, surpassing 932,000 since 1999. This is an immense tragedy.
In response to this crisis, the Centers for Disease Control (CDC) released guidelines in 2016, dictating generic maximum doses for all patients, irrespective of their medical condition or tolerance to pain medications. Though the CDC has recently revised some of these guidelines, the Drug Enforcement Agency continues to prosecute doctors who are believed to be overprescribing opioids. In my home state of Montana, several physicians have lost their jobs or medical licenses due to allegations of “over-prescribing” to patients in severe pain, including those with terminal cancer.
Furthermore, numerous state legislatures have imposed their own restrictions on opioid prescriptions. For instance, in Ohio, doctors are limited to prescribing only seven days’ worth of narcotic pain medication, regardless of the severity of the medical procedure or condition. These policy changes have made it increasingly challenging for pain patients to find doctors willing to provide the necessary treatment, including prescribing opioids.
Amidst all of these developments, I found myself grappling with unbearable pain. I never wanted to rely on pills or patches. As a former accomplished athlete, I prided myself on my toughness and resilience. I endured high-dose chemotherapy every other week and crawled down the stairs to join my family for dinner. However, no amount of fighting spirit could have sustained me through the years of agony I experienced due to this relentless disease. I was fortunate to have health insurance that allowed me to see a specialist who prescribed OxyContin to alleviate the inflammation causing my pain.
Nevertheless, getting these prescriptions filled was an arduous ordeal. Every month, my husband and I had to battle with the insurance company, who always seemed to wait until the last possible moment to approve the medication. Jay spent countless Fridays pleading with insurance bureaucrats to grant the necessary approval for my doctor-recommended treatment. Without insurance, the cost of each prescription would have been insurmountable. On occasion, the insurance company summoned us to their offices, where we faced nurses who suggested relaxation techniques and yoga as alternatives to medication, oblivious to the fact that I had already exhausted these options. Jay and I repeatedly defended ourselves against the assumption that we were addicts, presenting letters from doctors supporting our truth. However, the meetings left us uncertain about the fate of future prescriptions. In an effort to advocate for my treatment, my doctor faced immense pressure, spending countless hours on the phone justifying the necessity of my medication. Throughout this ordeal, I was plagued by shame for needing these medications, fearing that I would lose them and the life I had painstakingly built alongside the pain. I was filled with anger over the sheer difficulty of it all.
Three years ago, my condition inexplicably improved. The sarcoidosis ceased its assault on my nervous system, although it has since targeted my heart, necessitating the installation of a defibrillator. With the inflammation removed from my brain stem and cranial nerves, my pain has significantly diminished. Under the careful supervision of my physician, I was able to gradually reduce my reliance on pills and patches, which had once been essential for my daily functioning. However, there remains the possibility that the disease could return to my brain or another organ system, reigniting the need for pain management.
I can’t help but wonder about the fate of pain patients who still require opioids, especially at high doses. What if my sarcoidosis hadn’t shifted its focus to my heart? I am acquainted with legitimate pain sufferers whose medical practitioners felt compelled to abruptly reduce their opioid dosage by 75% or more, or sever their ties with them altogether. I can only imagine the anguish these individuals would endure during withdrawal. Even with a slow and supervised tapering process, I experienced minor withdrawal symptoms – from diarrhea and anxiety to rebound pain and insomnia. The potential for a resurgence of unrelenting, unmanageable pain is incomprehensible.
As someone who prided herself on her resilience, it is difficult for me to admit that I may not have survived without opioids. Yet, this is the stark reality. How many years could I have endured being confined to my bed, with pain obliterating every aspect of my life? How long until I would have had to make the unbearable choice to continue suffering or seek an end? These are not topics suitable for polite conversation. If the measures we have taken were successfully saving lives and preventing overdoses, the suffering of pain patients might be justified. Unfortunately, this is not the case. Despite a significant decline in opioid prescriptions, overdoses from heroin and illegally manufactured Fentanyl persist. Studies analyzing CDC data have found no proof of a correlation between prescribed opioids and non-medical opioid use or addiction. This means that the torment pain patients endure is not effectively addressing the overdose crisis caused by illicitly manufactured synthetic opioids like Fentanyl.
Today, my health has improved, allowing me to once again engage in activities such as cross-country skiing. However, the memory of the pain I endured remains vivid. I am now haunted by the knowledge that had my circumstances been different, opioids may have been the only lifeline available to me. It is a humbling realization.
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