Here is the full transcript of civil rights attorney Kate Nicholson’s talk titled “What We Lose When We Undertreat Pain” at TEDxBoulder 2017 conference.
Listen to the audio version here:
TRANSCRIPT:
A Life-Changing Experience
I was at the top of my game, working as a civil rights attorney at the Justice Department, when something happened that changed the course of my life. I’m at my desk, drinking a latte, typing away on a document due to court, when my back starts to burn. It feels like acid eating my spine. My muscles seize and throw me from my chair. I curl on the floor. My body sears with pain.
Over the next few weeks, the pain becomes constant. I can barely stand. Sitting is impossible. So mostly I lie down. I commute, lying across the back seat of a car to work from a futon on the floor of my office, and I use a walker to get from place to place. For a while that works, until one day, my ride’s late, I stand too long, my legs go, and I collapse.
Two Decades of Pain
I will be bedridden and in pain for almost 20 years. Later I’ll learn the cause was a surgery, when a doctor severed nerves in my spine. The pain only appears when the damaged nerves grow back. But try as they might, the nerves don’t repair. They rewire but malfunction, so a light touch is a blowtorch.
When I shower, fiery hot needles pierce my skin. Nerve pain intensifies. It escalates like an alarm that gets louder and louder. The longer it goes on, the worse it gets.
Looking back on it now, the thing I remember the most was the despair in my then-husband’s face.
This was a man who literally carried me in his arms from doctor to doctor. And then they told us there would be no cure, that I’d never get better, and would only get worse.
Perseverance in the Face of Adversity
When all of this is happening, I’m working as a civil rights lawyer. I’m arguing for the rights of people with HIV and AIDS to medical care, for the rights of people who use wheelchairs to have meaningful work. I guess the universe decided I needed some personal experience. I became a person with a disability working as a disability rights lawyer.
And I loved my job. I still had work to do. So despite what the doctors said, I decided to fight. And that was a good decision. I also made a bad one. Early on, I refused to take opioids for pain. I worried about addiction and stigma. When my doctors decided to stop treatments aimed at numbing and ablating the nerves and insisted on opioids, I was shattered.
The Opioid Dilemma
I felt like they were giving up. That I was being put out to pasture, drugged up, and written off. Out of options, I surrendered and swallowed the pills. And then something remarkable happened. I improved. I felt relief. I wasn’t foggy. Space opened in my mind and I could work again.
And so I worked as a federal prosecutor for more than 20 years, though I couldn’t sit or stand or really walk for most of them. I negotiated groundbreaking settlements against the San Francisco 49ers and Giants and the Walt Disney Company while reclined. On the right dose of pain medicine, I won important cases in federal court arguing from a folding lawn chair.
Accomplishments Despite Limitations
Once bedridden, I drafted the current regulations under the Americans with Disabilities Act, coordinated with the White House, and supervised thousands of cases by hundreds of attorneys across the country. All from my bed. And when the pain finally improved, I stopped taking opioids. I wasn’t addicted. I did have to taper to avoid side effects.
It was a happy anti-climax. Now many things healed me. Physical therapy, meditation, a medical device called a spinal stimulator, the hundreds of people who brought groceries and dinner and companionship to my bedside for 20 years. Art.
But opioids were essential. Everyone experiences pain. Some of you are in pain right now. And not just because you’re anticipating three more hours in uncomfortable chairs.
The Prevalence of Chronic Pain
For most people, pain is temporary. But if it lasts three months or longer, pain becomes chronic and it changes from being a symptom to a disease. According to federal statistics, 50 million Americans have persistent everyday or severe pain like mine. That’s one in six.
It’s also significantly more than are affected by cancer, heart disease, diabetes, or stroke. 2.5 million people abuse opioids. Opioid abuse is devastating and in every news cycle. And for the people affected and their families, it’s heartbreaking and poorly managed.
But our response as a society to opioid abuse is hurting the treatment of pain. How? A lot of the people who abuse opioids are using medication that wasn’t prescribed for them. They self-medicate with friends’ opioids, buy on the street.
The Unintended Consequences of Opioid Regulation
Some pose as pain patients and doctor hop. So to stop abuse, the law attacks doctors. Physicians have been sentenced to up to 30 years in prison when their patients sold the opioids they prescribed.
There’s a pain doctor right here in Boulder who’s no longer in practice because of a drug enforcement agent who posed as a pain patient. The perverse result of all of this is that fearing prosecution, doctors today are reluctant to prescribe opioids even when necessary and appropriate.
When I first moved to Boulder, I couldn’t find anyone willing to treat me. I had to fly back to D.C. It was expensive and painful and a long way to have to go to the doctor. But I could afford it. What happens to people who can’t? And what about the news story we hear about someone in pain who goes to the doctor, is prescribed opioids and becomes addicted?
Addiction Risk and Prevention
It happens. But it’s relatively rare and somewhat preventable. When people are screened for emotional pain and addictive patterns and then monitored after they receive opioids, the risk of addiction comes down significantly. But there are too few doctors who screen and monitor.
There are only a few thousand pain management specialists to treat tens of millions. So most people in pain go to the emergency room where there’s no screening or monitoring, none. Or they see their primary care doctor. But there’s a problem there, too. A lot of them weren’t really trained in how to treat pain.
A recent Johns Hopkins study found a glaring discrepancy between the prevalence of pain in society and time dedicated to pain in medical school. Only four U.S. medical schools had a single required course on pain.
The Need for Better Pain Education
So remarkably, the number one reason people go to the doctor, pain, and the number one cause of long-term disability in America, chronic pain, are under-addressed in medical education. That needs to change. And we need to work with doctors, not against them, to expand treatment for both pain and addiction. We need to educate ourselves about the dangers of sharing opioids with family and friends.
It doesn’t help them. It puts lives at risk and about proper disposal of unused medication. We need to develop the next generation of pain medicine, something that can’t be abused. But in the meantime, with the heat turned up on the opioid epidemic, let’s remember that opioids also heal people.
They’re the most powerful pain medicine we have. Instead of denying suffering people relief, a life, let’s properly medicate pain. Thank you.
