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.
ILLUSTRATION: ISTOCK
Thank you for speaking up for our group. It is criminal and inhumane what they have done to chronic pain patients.
Thank you for speaking out. It’s hard to believe that this is happening in the United States in 2025. Started by the Obama administration a decade ago, it just gets worse with each consecutive administration and Congress, and unfortunately, can only be solved on the federal level. My safe-seat legislators have refused to meet with me about my painful diseases and this issue for a decade now. Failure of gov’t all around – democrats and republicans. I hope people who live in purple states can continue to hound their legislators on our behalf. Addiction has never been solved by supply-side decreases (it’s actually always led to more death), and it never will.
Beautifully well said. You eloquently captured the struggle of Chronic pain patients. I will post a link To what you have written on the pain page I am an admin on. God bless you and your husband. I hope and pray that there will be a miracle for him and for all of us soon. I hope that his suffering can be treated once again. His suffering is also your suffering. Just like it is in my home. My husband is 100% supportive of me and my chronic pain.
I feel the pain you have been through. I’m am a chronic pain patient who suffers from 3 failed surgeries on my spine which has left my spine a mess because my body over makes scar tissue and I have nerve roots growing off nerve roots and nerve damage on both sides of my legs. I have severe Osteoarthritis and osteoporosis and severe degenerative disease and carpal tunnel syndrome in my hands. I tried everything possible to make it better but nothing works but pain medicine. But enough about me. My husband was injured when a trailer ran over him and broke so many bones he had to be put in a coma for a few weeks until they did multiple surgeries—they put metal bars in both legs, his pelvis, hips and tailbone, arm, shoulder, hand, and fingers and face were smashed, they put plates under his eyes where his cheek bones were and wire mesh for the eye socket. One lung was smashed and the other had a hole in it. The doctors said he was not going to make it. He did but has so much pain that he can’t work anymore and has trouble walking. His pain is horrible and the doctors don’t want to give him too much pain medicine because of the rules. I try my best to take care of him and when I have bad days, I make myself do it for him because I know he hurts more than I do. I don’t know what it will take for them to change the rules but they are killing people with this ruling because if it wasn’t for pain medication I don’t think we would be able to do anything in this world besides suffer from pain.
Thank you for sharing your husband’s story. It’s your story too.
my hope is you would share this story with the head of CDC, DEA, HHS, DOJ, and any other entity who may be responsible for not only shortages but arresting good physicians.
I could continue however, I’m sure there is no need to reiterate a subject you’re educated about.
Thank you again,
Pam
Thank you so much. This is important and urgent.
PERFECTLY WELL SAID!! Thank you so very much for being one of very few to draw attention to this growing crisis which has quite literally killed more than half a million Americans over the past five years, either by driving them to the streets for pain relief, and ending up poisoned by fake pain pills laced with illegally manufactured Fentanyl, or by patients losing hope that their pain will ever again be adequately treated by the physicians who are “supposed to be” helping them, and in utter despair and hopelessness, they opt to end their pain permanently by committing suicide.
Over the past 12 years, as a pain patient of 26 years who experiences this crisis daily, as well as an advocate for same, I and others receive notifications of these deaths. Stories of patients suffering in horrific unrelenting pain, hopeless that things will ever change, formulating plans to end their lives, end their suffering, and end the burden they perceive they are putting upon their loved ones.
I have felt this, and like the author of this article, my husband has lived it.
I often feel as though he is the REAL victim, because when I am laying on the couch, floor or bed, writhing in pain, sweat dripping from my deathly pale face, unable to catch my breath, unable to move, I know what is happening to me. It’s happened many times before, and will continue to.
My husband on the other hand, called home from work to find me in this condition, is terrified. He has no idea what is happening inside my body, let alone what he can do to help or stop it. He stands there, filled with fear that this may be the last time he will see me. That the last picture he will be left with is one of me in horrific unimaginable pain, and him standing there looking on helpless.
It’s a special kind of victimization, but our loved ones have been victimized by this as much if not more than those of us suffering in pain with no treatment, or inadequate treatment have.
God Bless them, and the pain patients they love for being strong enough to help us through.
Heartbreaking situation! We really need to pass some laws that enable doctors to consider each case individually and to relieve the terrible pain some people experience.