Novelist Lisa See on Pain and Perseverance

Editor’s Note: Your Stories typically features first-person narratives from people living with spondyloarthritis and their loved ones. Since author Lisa See has already shared her story in this format in a patient perspective paper published in Rheumatic Disease Clinics of North America, Volume 46, Issue 2 (also available at www.lisasee.com), this article presents her experience through a third-person perspective to offer readers a fresh look at her journey.

Critically acclaimed novelist Lisa See has reached many remarkable milestones throughout her career. From her novels being adapted for film to having achieved New York Times bestseller status with several of her works, Lisa’s career has been marked by numerous highs. But her proudest moment? Serving as the Grand Marshal of the Los Angeles Chinese New Year Parade.

“It’s probably not a big thing to other people,” she says, “but in my family, my great uncle was once the Grand Marshal. So when I was asked to do it, it felt like an incredible honor. It was something everyone in the family was genuinely impressed by.”

For Lisa, this recognition was uniquely meaningful, not because of the fanfare but because of her deep connection to her Chinese heritage and the pride it brought to her family.

Lisa’s humility, which places family recognition above worldly acclaim, also resonates in her willingness to share her personal story of living with ankylosing spondylitis (also known as axial spondyloarthritis, or axSpA). Her openness reveals a desire to connect with others through her experiences, providing insight into a part of her life she values for its quiet resilience rather than public acknowledgment. And just like in her books, where resilience is a recurring theme, Lisa’s approach to axSpA reveals her profound strength and adaptability.

“I tweaked my back on Friday,” she says. “It’s actually the most pain I’ve had in my back for a long time, and it’s hard even to get in and out of the car. It reminded me of when my mother-in-law, who was in her nineties, struggled with the same thing. And I thought, ‘Oh God, this is where I am now.’”

Lisa’s story begins with a theme common to most people living with axSpA: delayed diagnosis.

“For so many years, I didn’t know what was going on. There was always one idea or another about what it could be. So when I finally got a diagnosis at age 40, it was a huge relief. I could look at the x-rays and see my hip joint being completely fused. It wasn’t just ‘here’s some other theory’; it was something real,” she recalls. “I think for a lot of people, living in limbo, not knowing the root of what’s bothering you, can be really difficult.”

Lisa recalls her mother’s outlook on health, which was shaped by a belief in the psychosomatic roots of illness.

“My mom believed that any illness was a psychological manifestation of something else,” she says. “If you had a sore throat, it was because you wanted to say something to someone but weren’t saying it. So when my back hurt, she’d say it was because I was carrying burdens.”

The skepticism Lisa encountered from her mother only intensified the relief she felt upon receiving a concrete diagnosis. “Even as an adult, that disbelief was kind of baked in. To have the validation of a diagnosis was so affirming. Now I could say, ‘I have this,’ and move forward.”

Lisa’s journey with axSpA has shaped her approach to daily life and work. Writing, after all, involves hours spent in a chair, typing away at a computer—a setup that can be unforgiving for someone with chronic back pain. To manage her symptoms, she has a carefully customized workspace.

“I have a really fancy chair, and I set everything up so that I’m looking straight ahead. I’m not craning my neck or looking down,” she says.

She takes short breaks every 45 minutes to walk around, a routine that has become essential to maintaining her mobility and productivity.

One might assume that Lisa’s writing would deal directly with the pain and challenges of axSpA, yet she has chosen a different path, using empathy as a bridge in her narratives. In her novel, Snow Flower and the Secret Fan, she explored the lifelong pain of foot binding—a topic she says resonates with her in unexpected ways. Although she didn’t consciously write about foot binding with axSpA in mind, she realizes that her own health struggles may have informed her portrayal of chronic pain.

“The lifelong pain of foot binding—it’s a concept I relate to, that constant cloud of pain,” she shares. “Just like women with bound feet, who still had to cook, clean, take care of children, and keep the household running, I still have to go on with life despite ankylosing spondylitis.”

Lisa finds herself adapting her routine constantly, balancing her career demands with self-care. When it comes to book tours—a rigorous aspect of any author’s career—she plans meticulously to protect her body.

“For a tour where you’re in a new city every day, you’re really unwise to check a bag,” she says, laughing. “I have a bag that rolls on four wheels so I’m not pulling it. I also take time to rest, and I bring a lot of water.”

One surprising addition to her routine is exercise, which she has embraced for the sake of managing axSpA.

“I hate to exercise,” she says bluntly, “but I do yoga and Pilates twice a week. Both are essential to keeping me from freezing up.” She recounts her journey to touching her toes as a personal victory. “I had a Pilates instructor ten years ago who told me I would touch the floor. At the time, I could barely touch my knees. But after two years, I could. And I’m going to keep at it—I’m not letting that go.”

Despite her efforts, axSpA does impose limits. “There are things I’ve had to give up, like gardening. I can’t do anything that requires looking down for too long. Even reading has to be done carefully—I set up my books so I’m not straining my neck. When I’m giving an author talk or reading, I make sure to ask for a podium so I don’t hurt my neck by looking down.”

These adaptations aren’t just practical steps; they’re acts of resilience that enable her to continue creating stories that resonate with readers around the world.

“If I’m having a really bad day, I baby myself,” she says. “I pay attention to the early signs of a flare-up and give myself permission to rest.” This adaptability is something she encourages for other writers dealing with chronic illnesses.

Living with axSpA has also heightened her sensitivity to the world around her. She shares how the weather, especially Southern California’s rainy winters, directly affects her. “I can tell when a storm is coming, even without a weather forecast,” she says, describing how barometric changes increase the pressure inside her body. It’s one of those lesser-known aspects of chronic pain that those without such conditions rarely consider, but for Lisa, it’s an essential part of managing her well-being.

Yet despite the challenges, Lisa maintains a positive outlook, emphasizing the importance of enjoyment and finding ways to adapt. An avid tennis player, she finds solace on the court, even though the sport can be taxing on her body.

“I don’t know if tennis is the best for me, but I have so much fun that I want to keep playing as long as I can,” she says with a smile. “If you’re having fun, that’s a key element.”

Looking ahead, Lisa See remains engaged with her readers, often meeting with book clubs virtually. Fresh off a book tour for her latest novel, Lady Tan’s Circle of Women, she balances her dedication to her craft with self-care to maintain her health and manage her axSpA. With each new chapter in her life and writing, Lisa continues to inspire, building a legacy rooted in resilience and the joy of storytelling.