When Resilience Emerges from a Life of Chronic Pain

Resilience is not just a trait we want our children to have, it is a trait that individuals living with chronic conditions can develop, nurture, and improve every day. Civil rights attorney and TEDx speaker Kate Nicholson shares how this characteristic helps her deal with chronic nerve and back pain.

For 20 years, pain patient advocate Kate Nicholson lived with debilitating, relentless chronic nerve pain so intense that she couldn’t stand or walk for 15 of those years. After multiple medical interventions, she’s “healing.” While not cured, her pain is manageable and, after 17 years, she’s no longer taking pain medication.” Recently, PPM spoke to her about living with and through pain, and how practicing resilience helped her live better and hurt less.

An Ordinary Day

Summer 1994. After a morning hike with friends in the Shenandoah Valley, newly-minted attorney Kate Nicholson, two years out of Harvard Law School, headed to her Washington, DC office in the Civil Rights Division of the Department of Justice to polish a legal brief. It was a Sunday, so the office was deserted. Kate, then 30, describes it as an unremarkable, ordinary day.

She was sitting at her desk, drinking a latte when she felt a burning sensation down her back. “It felt like acid eating my spine. It was horrible,” she says. And then something happened, perhaps the muscles in her back cramped, triggering spasms that propelled her out of the chair and onto the floor where she lay “curled into a fetal position.”

And just like that, an ordinary, unremarkable day turned into a horror movie.

But unlike a horror movie, this film didn’t end. For the next 20 years, incapacitating, chronic pain became Kate’s constant, relentless and perversely loyal companion.

Life Uprooted

Unable to sit, stand, or walk more than a few steps even with a walker, she commuted to work lying across the backseat of a car. She was lucky that her employer, the Justice Department, accommodated her to the fullest. And she’s well aware of the irony: “I was now a disabled person enforcing the Americans with Disabilities Act,” she says with a hearty chuckle. “I guess the universe decided I needed some personal experience.” Even with that workplace support, her job shifted for a time to “tasks that could be completed from a reclining position—primarily writing briefs and drafting regulations and, on occasion, arguing in federal court from a reclining lawn chair,” she says. Most of the time, she worked “from a futon in my office,” she says.

Kate Nicholson continued her work as a civil rights attorney for 20 years, despite her chronic pain, often working remotely from a futon or being driven to work at the Justice Department while lying across the backseat of a car.

Over the next three years, Kate saw a variety of doctors who offered a range of diagnoses, from multiple sclerosis to ankylosing spondylitis. She tried acupuncture, behavioral therapy, and other alternative treatments, too. “I was able to afford to do that,” Kate says. Finally, she was referred to a multidisciplinary pain clinic where a team of pain specialists looked at all the symptoms and puzzled out the cause. Kate learned that the root of her unremitting pain was a surgical mishap that happened years earlier during an operation to treat her endometriosis. According to Kate, during the operation, the surgeon had damaged nerves in the lumbosacral plexuses, the areas in the lower back and pelvis where nerves intersect.

Kate says the symptoms only surfaced as the damaged nerves began to regenerate “leading to scarring and adhesions,” she explains. Before this attack, she had no indication that something had gone wrong with the prior surgery.

After trying various interventions – including another surgery—without real success and after being hospitalized when her legs collapsed under her while standing too long for a presidential motorcade to pass, Kate’s pain specialist, looking somber, recommended a course of a long-acting opioid. She reluctantly agreed. Her hesitancy stemmed from the fear that by prescribing opioids her doctors were signaling that her only option was palliative care. “It sounded like they were giving up on me,” she recalls.

Instead, it was the pain that gave way. The medication reduced the pain that had upended her life. As the pain receded, “opening up space in my brain,” she continued working remotely overseeing civil rights cases in US attorney’s offices across the country.

The DNA of Resilience

Listening to Kate tell her story begs the question: Why was she able to weather the pain and life disruption without taking a serious hit to her psychological well-being? Why do some people who live through trauma or tragedy or with chronic illness develop post-traumatic stress disorder (PTSD), retreat from life, turn to drugs, or just give up? Why does pain destroy some people’s lives while others are able to persevere, finding ways to live life well, despite the pain?

In psychological parlance, that enigmatic ability to bounce back is called resilience. Kate defines it as the ability to have a decent life in adverse situations. Researchers studying resilience are striving to identify its biological, cultural, and emotional elements. For example, studies show that resilient people tend to be more flexible and able to adapt to difficult circumstances and stressors. Studies also indicate that optimistic people are—or seem to be—more resilient. So, is resilience hard-wired in our DNA? Is it based on nature or nurture and life experiences? Are some of us more sensitive psychologically and, therefore, less resilient? Likely, all of the above are true. Resilience—or the traits attributed to it—are probably coded in our genes and also shaped by our personalities and life experiences in childhood and beyond.

Even though the scientific jury is still out, resilience is increasingly viewed as an important way to help individuals living with chronic pain to better cope with their pain.

Kate’s childhood, she says, likely contributed to her resilience. “I was in 8 different schools by the time I was in 5th grade,” she recalls. Those experiences taught her to more flexible and to adapt to new circumstances from a young age. She also considers herself an optimist, always hopeful and known for her “big personality, tenacity, and grit.” When pain came, she was hell-bent on maintaining as full and fruitful a life as she could under difficult circumstances. “I think most people probably want that and try for that,” she says. But she cautions that it’s important to understand and recognize that some people don’t have the psychological toolbox that she did. “I happen to have brain chemistry that didn’t make me susceptible to the anxiety and depression that is common with chronic pain,” she says.

Certainly, Kate has had many bad days and some really bad days, but she has never lost hope or the belief that things would get better. And she refuses to live without enthusiasm and passion. She’s very aware and repeatedly emphasizes that, unlike many people living with chronic pain, she had financial resources as well as a supportive employer, community, family, and friends to get her through her treatment trials and to help keep her life on track.

In July 2019, shortly before she spoke at the HealthyWomen conference in Maryland about her journey, she shared her resilience-building strategies with PPM:

Pain Patient Advocate Kate Nicholson had the opportunity to give a TEDx talk (https://www.youtube.com/watch?v=u4vHSLeTe-s).

Kate Nicholson’s ABC’s of Resilience

A) Accept support and social interaction. For Kate, having a strong support system and community has been critical. “I have always had social support and friendships and that really sustains me,” she says. “The day that my pain started I had been out hiking with a group of friends before going to the office. A month later, I was home in bed and they all went out for a hike and then they came over and cooked me dinner, brought things from the mountain, and described what they had seen,” she says. Her friends helped her experience the hike and “that was really helpful to me,” she says. In addition, people often brought her meals and groceries so that she didn’t feel isolated.

B) Be open to new things. A voracious reader who never owned a television, Kate was in so much pain that concentrating on a book proved very difficult. Friends and colleagues stepped in, coming over to read to her and entertain her. Unable to get out of bed  she was determined to find a way to fulfill her need for cultural stimulation. “I wanted to live as full a life as I could so I kept looking for ways to do that and alternative ways to satisfy my interests,” she says. Even little things—coloring in a coloring book or listening to a play—can shift one’s consciousness and open the mind to new possibilities. “One day out of nowhere I started drawing, something I’d never done before,” says Kate. And that novel activity “shifted my thinking” she says. She found she had a passion for art. From her bed, she scoured art online and quickly realized that once she looked at a work of art, she could recall it in perfect detail. “I started using that ‘skill’ as a kind of meditation and it became very rich and rewarding for me.”

C) Recognize change. When you’re in pain, you may feel as though you are in a war zone by yourself even if someone is sitting next to you, says Kate. Pain can create a divide between you and others. You may lose intimacy even if someone in your life is trying to stay as connected as possible. “I think recognizing that divide is important….mourning loss is important,” she says. “I don’t believe in ignoring those feelings.”

D) Defy the fear. Chronic pain can be isolating. It’s easy to hunker down and avoid contact, fearful of the need to explain that today your pain is bad or you’re experiencing a flare. Some people may disappoint you while others surprise you. “Stay connected and in the world as much as possible,” says Kate.

E) Expand your mind. When you’re in a lot of pain, it’s easy to feel locked in your body. “It’s as if there’s a hard, invisible carapace around you, a kind of stiffness,” says Kate. She turned to meditation to breakthrough. “Once I started to really meditate, I was able to open up space around me and understand that I didn’t have to feel locked in,” she says. “Over time, practicing meditation helped me regulate my nervous system and ultimately reshape my whole experience,” she adds. Kate found the process to be quite remarkable. “I have a big personality,” she says, “so discovering the value of surrendering and silence, of finding a quiet place within myself and relaxing into what was happening in my body was a profound experience.”

F) Keep fighting. “Hope is huge in coping with pain,” says Kate. Having hope doesn’t mean you’re immune to despair “I had hope but experienced periods of great despair,” she says. But even through dark periods, she found that inner voice that said, “You’re going to keep fighting this. There has to be a way out of this. Even in the worst despair there are a few things that are going OK. There is hope.”

G) Be grateful. When you’re under constant assault from pain, that physical reality can become all-encompassing. Don’t let your mind get caught in negative feedback loops that tell you that nothing will ever change and that life can’t get better.   If you find yourself falling prey to that negativity, challenge that judgmental voice. Talk back to yourself. Contradict those negative thoughts. Even when you’re in pain “and as difficult as it may seem, try to remind yourself that the pain isn’t the same every moment,” says Kate.

Two Decades Later, Still Going Strong

Fall 2019. After nearly two decades with the Justice Department, Kate left Washington, DC, and moved to Colorado a few years ago “to have a healthier, less stressful lifestyle” she says. She lives in Denver with her partner and continues to advocate on behalf of pain patients. The love of art she discovered years ago continues to grow. Along with her advocacy, speaking engagements, writing and other pursuits, she serves as president of Tilt West, a Denver-based hub for community gatherings, conversations and dialogues about art, ideas, and culture.

She’s still in the process of healing. “Healing is a topsy-turvy thing when you have a complex condition,” she says. “There’s no cure for what I have.” Still, after moving to Denver and “literally learning to walk again,” she had a few good years and eventually managed to start hiking again. “I thought I was completely out of the woods,” she says. She was wrong. In 2016, while hiking, her legs gave out again. “My spine had degenerated a lot, compressing the nerves in my legs,” she explains. She had to have her spine rebuilt, taking money out of her retirement account to fund the surgery. “But at least I had a retirement account,” she says.

After 17 years on opioid therapy for pain management, she is now off the meds. And contrary to the horror stories some may hear about opioid therapy and discontinuation, I never needed a higher dose, she adds. “Once I was given a good plan to taper off I had no trouble,” she continues. “Well, I did experience a tiny bit of insomnia but nothing major. It was a very happy anti-climax for me.” Her pain is still chronic but nothing like the “high impact” pain she had before. “I’m able to walk and live a normal life,” she says. Regular physical therapy, Pilates classes, meditation, and stress-reduction help her control the pain. And, occasionally, she takes a muscle relaxant. “How I feel now is night and day from the pain I had before,” she says. “Now, I can have a full life.”

As a fierce advocate for pain patients, Kate says she’s very conscious of not pushing her optimism on others. “I don’t believe in ignoring or forcing feelings,” she says. In her talk at the HealthyWoman conference, she says she always stresses to clinicians the importance of “meeting people where they are,” and not judging those who may be feeling low, depressed, or moody.

“I remember saying to someone many years ago that I felt lucky as I had so many advantages in my life,” Kate says. The person responded, “Please, your life has sucked.” She laughs a big, boisterous laugh. “It’s all your perspective,” she says.  

In July 2020, Kate was appointed to the CDC's Opioid Work Group to review and enhance its 2016 opioid prescribing guidelines. Follow Kate on Twitter@speakingabtpain https://twitter.com/speakingabtpain Watch her 2017 TEDx talk.

Updated on: 07/24/20