Ruth Fein Reflects on Turning Life with Chronic Cancer into Inspiring Stories and Patient Advocacy

PHOTO: Award-winning author and advocate Ruth Fein, sharing her journey of resilience, advocacy, and writing to empower chronic cancer patients worldwide.

Transforming Challenges into Aha! Moments

Ruth Fein discusses her inspiring journey with chronic cancer, blending journalism and advocacy, her book The Big C², and her mission to empower patients through storytelling and education.

Ruth Fein’s remarkable literary journey is one of resilience, empathy, and purpose, and it is with great pleasure that we spotlight her in this issue of Reader’s House. With a distinguished 40-year career gracing the pages of esteemed publications like The New York Times and a globe-spanning dedication to patient advocacy, Ruth stands as a luminary in health and life science writing. For more than three decades, she has lived with a rare chronic blood cancer—a deeply personal experience that has shaped her advocacy and writing, empowering countless individuals facing similar challenges.

Her profoundly moving book, The Big C² – Stories from the Chronic Side of Cancer, is a masterful tapestry of personal narratives and interviews with patients, caregivers, and renowned specialists. It not only offers vivid insights into the realities of chronic cancer but also inspires readers through moments of wit, wisdom, and poignancy. In this interview, Ruth shares her motivations, her unique methodology of blending journalism with advocacy, and her mission to demystify complex medical topics for diverse audiences. Her work resonates deeply, offering not only information but also hope and validation to cancer “thrivers” and their loved ones. It is an absolute privilege to share her wisdom and the incredible impact of her writing with you in this edition.

Ruth Fein’s powerful storytelling and tireless advocacy exemplify compassion, resilience, and the ability to inspire and empower others.

In your book “The Big C² – stories from the chronic side of cancer,” you weave together your own story with the experiences and insights of others. Could you discuss how your life with a chronic cancer shaped the narratives within the book?

I don’t know anyone who hasn’t been personally touched by cancer. Living with a rare, invisible blood cancer for 30 years fills my head and heart with experiences others could benefit from reading – people living with cancer, their family and friends, their medical teams. I combined my own essays and life stories with interviews I conducted with people affected by cancer, including prominent specialists, even an end-of-life doula who speaks to what everyone over the age of 18 ought to think about and plan.

As a reader, I am most rewarded when I want to reread a sentence just to enjoy the rhythm of the rhetoric or a perfectly poignant description. That’s my goal in my writing, to create an enjoyable read, even when the subject is as serious as cancer.

“I think like a patient. I question like a journalist. I write to educate, empower and enlighten.” – Ruth Fein

Each chapter reflects a theme I have lived. For example, I often hear “but you look fine.” While well-intentioned, it can feel like your symptoms and disease are discounted. I remember feeling like a cancer “imposter” with my waist-long curls next to dozens of patients donning headwraps and wigs in a leukemia waiting room. I centered an interview on this common experience so it is a part of someone else’s story, in this case, Michele.

Though chemotherapy, exhaustion and missed social gatherings were a part of her regular routine for years, two of Michele’s closest friends recently made comments that had her trying desperately to keep her raised eyebrows from freezing in place. “You are lucky you have never really felt bad,” is the paraphrase she describes. “These were days that I didn’t even want to get dressed . . . or get out of bed,” she recalls thinking. Then she was hit by the common denominator. She never explained, even to her besties, how bad she was feeling.

What other themes do you address through the stories in your book?

There is no right or wrong way to live with cancer, or to support someone you love with cancer, or for that matter any chronic illness. Each story is intended to leave the reader with an aha! moment. Inspiration is between every line, sometimes with a chuckle and a tear on the same page. Advocating for yourself can be life changing (even life saving); dealing with the uncertainty of a chronic cancer; creating a mission-driven life alongside a cancer journey; the underrecognized physical and emotional effects of a cancer treated or cured years earlier. Scientific advances mean more people are living with cancer. Changing how we talk to and about these cancer “thrivers” is an omnipresent thread. 

“Each story is intended to leave the reader with an aha! moment.” – Ruth Fein

How has your 40-year career as a health and life science writer influenced your approach to patient advocacy, particularly for rare blood cancers?

I think like a patient. I question like a journalist. I write to educate, empower and enlighten. My work as a freelance writer crossed over to patient advocacy when I first wrote about myeloproliferative neoplasms (MPNs) and my personal story in a piece for The New York Times in the middle of a raging pandemic. Hundreds of patients, family members and even practitioners thanked me. They were grateful to finally have an understandable piece they could share which explained the rare cancer they awoke to every day. This is when I realized the gap in knowledge, understanding and resources. So, I began to report for media outlets with broad cancer audiences. Others labeled me an advocate, as I was a patient-centered informant. When I cover a story or write a patient or researcher profile, I approach it with the skill of an interviewer and the inquiring voice of a patient.         

“There is no right or wrong way to live with cancer or to support someone you love with cancer.” – Ruth Fein

As a patient representative on the National Comprehensive Cancer Network’s clinical guidelines panel, what key changes have you advocated for to improve patient care?

It is humbling to be the only patient member of an esteemed panel of 32 physician/scientist experts. I am happy to leave as a legacy one addition to the recommendations for physicians treating MPN patients. Acknowledge that chronic conditions come with stress of uncertainty that can affect quality of life. It is now prominently recommended that physicians recognize this, regularly evaluate MPN patients for emotional/mental health, and offer support services as needed.

Through the global webinars and podcasts you have hosted, including “The Other Side of Cancer,” you engage with a wide audience. How do you address topics and ensure that speakers’ content remains relevant and supportive for cancer patients and their families?

I am involved in multiple patient groups so I hear what is on their minds, what they want to know more about, where the gaps are in information. When I ask questions of experts, I am not hesitant to push for simpler explanations. I often ask them to explain things as if they were speaking to a school class of 11 and 12-year-olds.

With your extensive background in ghostwriting, including medical textbook chapters, how do you balance maintaining the original voice of the author while ensuring the content is accessible to a broader audience?

Ghostwriting can take many forms. My formula is to interview the expert whose story or expertise I’m sharing, with additional research as needed. In one case, I travelled five hours every other week for six months to meet with the author. I then wrote a book of his stories, in his voice, with my improvements to improve interest, organization and quality.

Considering your experience in both writing and patient advocacy, what do you believe are the most effective strategies for conveying complex medical information to the general public?

Ask questions patients want answered. Q&As are a helpful, relatable format. If the reader can’t explain what they have read to a 12-year-old, it is too complex.

What advice would you offer to aspiring authors who wish to combine their personal health experiences with professional writing to advocate for others?

Consider what you want the reader to take away. Then, what format will work best to serve that purpose. Is it a memoir meant to inform or inspire others? Is it your own story combined with others’ voices or expertise? Is a “how to” or academic approach best or creative non-fiction? Make an outline of your themes and take-aways. Speak to people in your intended audience and ask them what might make the book most meaningful.