English professor Carolyn Betensky shares her husband’s story of living with severe, intractable pain, and makes a case for compassion and systemic change to ensure he has access to the medication that helps ease his suffering.

By Carolyn Betensky

This is not my story to tell. It’s my husband’s story. I am telling it for him because he is in too much pain to tell it himself.

Robert is a victim of the opioid crisis. But he is a victim unlike those you’ve heard about. Opioids have not killed him. They have kept him alive.

In addition to the unsuspecting and misinformed patients who were prescribed opioids inappropriately, in addition to those who turned, with tragic results, to illicit opioids or diverted prescriptions in hopes of relieving their physical and emotional suffering or getting high, there is a second, desperate class of victims of the opioid crisis: patients whose medical conditions leave them in intractable, excruciating pain. These patients cannot get the treatment they need because their doctors are afraid of being prosecuted for prescribing opioids in quantities or dosages sufficient to make their patients’ lives livable. These patients cannot get the treatment they need because, in some cases, their doctors are prohibited by state laws from doing so. Often, they cannot get the treatment they need because pain management doctors in their area are not accepting new patients—or because there are simply no doctors left in their area who will prescribe opioids.

You would not know that people in serious pain have trouble getting it treated unless you were one of them, or unless you were a caregiver to one, as I am.

Opioids are a lifeline for patients who do not benefit from alternative approaches. Robert is one of these patients. He suffers from a rare and exceedingly painful kidney disease that has no cure. For 20 years, he has taken opioids exactly as they are supposed to be taken. He has never taken opioids prescribed to anyone else, never experienced euphoria from his medication, never taken more of his medication than was prescribed to him, and never overdosed. He has never sought illegal narcotics, nor has he given or sold medications prescribed to him to any other person. Opioids have enabled Robert to lead a life of less agony.

In 2016, in response to mounting overdose deaths and reports of unscrupulous doctors running “pill mills,” the U.S. Centers for Disease Control and Prevention (CDC) issued far-reaching guidelines for prescribing opioids that aimed to curtail their abuse. As a result of these guidelines and the crisis that precipitated them, state legislatures enacted laws limiting the quantity and strength of pills physicians could prescribe, and pharmacies were quick to follow suit. At the federal level, the Safe Prescribing Plan, passed in 2018, limited the production of opioids. The Drug Enforcement Agency, meanwhile, has conducted raids of medical practices and prosecuted physicians deemed to have overprescribed narcotics. State departments of health and health insurance companies have likewise enforced policies making it difficult for intractable pain patients to find the treatment they need.

The CDC acknowledged in 2022 that overzealous and indiscriminate application of its 2016 policies has resulted in great harm for those who have no alternative to opioids. Yet it has done nothing to counterbalance the damage it has done. There has been no move on the part of the CDC or any other organization with medical or law enforcement authority to assure that pain patients receive care. Physicians remain uncomfortable prescribing opioids to patients who need them. In 2021, the Rhode Island General Assembly passed a law shielding physicians from prosecution when they have been prescribing opioids responsibly. But if physicians are not actively trained to prescribe opioids when they are needed, such a law is meaningless.

We are taught not to stigmatize drug addiction. Addiction is to be viewed as a disease, not as a personal failure. The person who becomes addicted to narcotics is worthy of our compassion. Yet where is the compassion for the vulnerable members of our society who have been forced to live in torment? When all-or-nothing thinking regarding opioids renders physicians too uncomfortable to alleviate the pain of their patients, they do not have to face the human suffering they leave untreated. I do.

Professor Carolyn Betensky chairs URI’s Department of English. She teaches 19th-century British and world literature and courses on the literature of protest. She is writing a book on compartmentalization in Victorian literature, which includes a chapter on the representation of pain in the novels of Wilkie Collins.

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