Why I Went Public About Serious Pain and Opioids

By Kate Nicholson.

I recently gave a talk at TEDxBoulder about what we lose when we undertreat pain. I began by telling 2200 intimate listeners how a surgical error left me in severe pain, unable to sit or stand and largely bedridden for almost twenty years. Seeing how difficult it is for people in pain to get treatment today with the heat turned up on the opioid epidemic inspired me to tell my story. My pain began in the 1990s, when treating pain was a priority, and appropriate pain treatment allowed me to continue working as a high-level federal civil rights prosecutor despite my physical limitations. You can see my talk, which pivots from my personal story to examine some of the social and legal issues around pain and opioids, at https://www.youtube.com/watch?v=u4vHSLeTe-s.

Kate Nicholson

My story of pain began twenty-three years ago.  I was working at my desk in the Civil Rights Division of the Justice Department, putting the finishing touches on a document due to court, when my back started to burn. It felt like acid eating my spine. My muscles seized and threw me from my chair.  As I curled on the floor, my body seared with pain. Over the coming days and weeks, the pain only intensified. Any postural compression on my spine caused electrical and burning sensations to escalate like an alarm that grows louder and louder.

At the age of thirty, just a couple of years out of law school at Harvard, I could barely stand. Sitting was impossible. Reclining became my dominant posture. For a while, I commuted, lying across the backseat of a car to work from a futon on the floor of my office, using a walker to get from place to place. But for many years, I was entirely bedridden.

Two things allowed me to maintain a life under these circumstances. The first is that I happened to be working in one of the few jobs that would accommodate me. When my pain began, I was enforcing the Americans with Disabilities Act, a civil rights law that protects the rights of individuals with everything from MS to cancer to HIV disease.

The second and more critical factor was my access to good medical care. My doctors tried all sorts of treatments, from lidocaine infusions and directed injections, to nerve ablations, to a surgery to separate nerves from adhesions, but nothing restored my mobility or diminished the pain.  When my physicians approached me about taking opioids for pain, I was, at first, devastated. I felt like they were giving up, that I was being put out to pasture, drugged up and written off. I worried about addiction and stigma.  But I had exhausted my available treatment options, so I relented and underwent psychological screening to determine if opioids were appropriate.

As soon as I took opioids, I improved.  I wasn’t foggy or especially euphoric. In fact, the opposite happened, space opened in my mind and I could work again. Opioids did not heal me, but they allowed me to be as active and engaged as possible under the circumstances.

On the right dose of pain medicine, I pursued my job with vigor. I won important arguments in Federal court from a folding, reclined lawn chair.  Using video teleconferencing, I negotiated with the San Francisco 49ers and the Giants and the Walt Disney Company while reclined. I drafted the current regulations under the ADA, coordinated with the White House and supervised thousands of cases by hundreds of attorneys across the country from a screen and well-camouflaged bed.

Although it took considerable time with integrative treatment, I eventually recovered from a condition that I was told would only ever worsen.  And when the pain finally improved, I stopped taking opioids. I never developed tolerance requiring more medication for the same pain-relieving result. I experienced no difficulty in going off of opioids, although I did have to taper and go slowly to avoid side effects.

I understand that opioids are complicated.  People are different; opioid-induced analgesia exists. I also recognize that as a public health matter, the interests of treatment must be balanced against the potential for abuse.  But serious physical pain needs to figure into the conversation, especially since severe or persistent pain affects 25 times more Americans than opioid abuse. I worry that we are throwing out the baby with the bath water. By focusing on a single substance, we are not addressing the root causes of addiction.  By placing undue pressure on physicians and the doctor-patient relationship we abandon people in severe pain, many of whom could contribute and lead productive lives, to their suffering.

Kate Nicholson served in the Civil Rights Division of the U.S. Department of Justice for more than 20 years, practicing health-related civil rights law and securing powerful victories including in the U.S. Supreme Court.  She is currently writing a book about her personal experiences with severe chronic pain.  Kate is also an arts writer and enthusiast who helped found the new non-profit, Tilt West, www.tiltwest.org, recently named by Westword as the “best think tank for arts and culture” in the area.  Kate was a Senior Fellow at Dartmouth College and is a graduate of Harvard Law School.