Maria de Jesus Morfin Cruz’s story, recounted on a video, begins with the soft strains of bossa guitar playing over a simple yet heartbreaking statement: “A la edad de siete años, mi madre murió de cáncer de la matriz — At the age of 7, my mother died of uterine cancer.”
Through words and family photos, the native of Mexico, now living in Sunnyside, Washington, goes on to tell the story of her life. She describes the loneliness she and her siblings felt when they went to live with relatives after their mother’s death. The joy she experienced when she started her own family and moved to the U.S., and how that joy was dampened by her own uterine cancer diagnosis at the tender age of 20. She survived, thanks to surgery and her own persistence, but in 2003, she went back to Mexico to visit a sister and learned that she, too, had been diagnosed with advanced uterine cancer. Her sister died soon after.
“My message to women is to learn from my story,” Morfin Cruz says in Spanish (with English subtitles) at the end of the short video she created with the help of researchers from Fred Hutchinson Cancer Research Center. “Take into account the signals your body gives you. I developed a tumor at 20 years of age and I fought to receive the medical care I needed. My recommendation is to get your screening exams. That way they can detect the disease in time and save your life so you can live to meet your grandchildren.”
It’s a powerful story and a powerful message. Now a new study out from Fred Hutch’s Health Disparities Research Center, published recently in the journal Health Promotion Practice, confirms it’s also good science.
The power of sharing your story
Research — not to mention Hollywood — has consistently shown us there is power in sharing stories, particularly stories about the profound changes wrought by cancer and other diseases. Not only is it healing for the storyteller — it helps them to reflect, process and make sense of what’s happened to them — it’s helpful for the listener.
As Fred Hutch public health researcher and lead author Kathy Briant put it in her paper, “Stories are used to teach and to remember struggles so that others may struggle less.”
Reading or listening to other patients’ stories can actually improve a patient’s health, according to studies, and this applies to sharing via social media and online patient forums, as well. Stories can also relay crucial health messages in a much more understandable way. You might not remember that every 50 gram portion of processed meat eaten daily increases your risk of colorectal cancer by about 18 percent, but you will remember your Uncle Joe telling you, “You know, kid, if I hadn’t eaten a rasher of bacon every morning for 30 years, I might not be wearing this colostomy bag.”
Briant and fellow researchers at the Sunnyside-based Center for Community Health Promotion wanted to know if digital storytelling — creating a short video with music, photographs and personal health narratives — would be beneficial to underrepresented groups such as the Hispanic/Latino community in the Lower Yakima Valley. So they invited members of the community to a series of digital storytelling workshops, ultimately producing Morfin Cruz's poignant video and 17 others. The digital stories, all available on Fred Hutch’s YouTube channel, cover everything from dealing with a cancer diagnosis to learning to live with diabetes to trying to help loved ones kick the smoking habit.
Public health messages with cultural relevance
The Sunnyside videos are not just simple health narratives. They’re powerful messages of strength, survivorship and disease prevention that speak to a segment of the population often wracked by health disparities. They’re public health messages that hit the cultural mark.
Hilda Hernandez, diagnosed with breast cancer in 2009, talks about her surgery, chemo and radiation and shares pictures of the hollow space under her left arm where lymph nodes were removed. She also shares pictures and talks about the resulting lymphedema — “Ahora tengo un brazo gordito … y otro flaquito — Now I have one arm that is chubby … and another that is skinny” — and discusses activities she avoids so the condition won’t get worse. Antonia Gutierrez shares the fear she felt upon being diagnosed with colon cancer and the trepidation she had about starting chemo. But she also talks about how she was able to work through treatment and now goes in for regular follow-up appointments with her oncologist to make sure her cancer stays away.
After analyzing the participants' responses to a set of questions, the researchers concluded digital storytelling was not only a culturally relevant health promotion tool, it provided a healing outlet for participants and helped them find support and connection within their community. By sharing their cancer stories, participants had also helped to dispel myths, provide crucial insight and model survivorship.
As Briant put it in her paper, “Digital stories impart more than information about the symptoms of an illness. They provide hope, strength and encouragement.”
The need to talk
Dr. Rachel Ceballos, a Fred Hutch public health researcher who also studies health disparities among underrepresented groups, said sharing cancer stories is particularly important for communities of color, which are often at higher risk of dying of the disease.
“Cancer isn’t talked about in either the Latino or the African-American communities,” she said. “There are a number of reasons that contribute to that. In the Latino community, there may be a belief that talking about [cancer] might cause a recurrence. Or in either community, cancer may be viewed as a punishment or a weakness.”
But both researchers have found these patients need to share, sometimes desperately so.
Ceballos recently finished a study of African-American breast cancer survivors and the emotional impact they experience transitioning from active treatment to survivorship. But her study got off to a slow start because many of the women first needed to process what they’d been through.
“We had one question, ‘Tell me your story,’ to get them talking,” she said. “It was supposed to be an icebreaker. I expected people would talk for about 10 minutes but for a good portion of the women it was the first time they had talked about their cancer in detail or the first time anyone had asked. For many women, sharing their story was an extremely emotional experience and for some it took up to 40 minutes of the hour-long session because of the emotionality. We realized they hadn’t had a chance to process that emotional impact and had to adapt our questions along the way to allow them to talk but still get to our questions.”
Briant said from the very first meeting with her Sunnyside study participants, the storytelling intervention was “powerful.”
“We [started] by just listening to people,” she said. “And they were so emotional. Some people hadn’t openly shared their particular story before. Some people were crying. It was so moving and I felt honored to be able to be in that space. We kind of gave them a place to process and reflect on their experience.”
Fred Hutch community health educator Nora Gonzalez, who helped with the storytelling workshops, also created her own video about her father’s battle with stage 4 prostate cancer (he currently has no evidence of disease).
“Our family has survived cancer together,” she says at the opening of the video, going on to tell the story of her father’s diagnosis, extensive radiation treatment and eventual remission — and the fear her entire family felt throughout the ordeal. Sprinkled throughout are pictures of the Garcia family dancing, laughing, celebrating anniversaries and birthdays, and making tamales together at Christmastime.
“Oh, my goodness, making his story was very emotional,” Gonzalez said of the process. “We all felt that we had to be so strong during [my father’s cancer treatment] and not pay attention to our emotions. I shared it with my family on his birthday not long after we finished it and it was very powerful. It made a lot of impact.”
Gonzalez said creating a digital story was especially cathartic for those who’d gone through cancer because it felt like they’d finally been given permission to discuss something forbidden. As one participant put it during an exit interview: “It felt good to talk.”
“The cancer survivors in the community had never talked about it before,” Gonzalez said. “It was kind of taboo. They were afraid to share it [because] people would avoid them, thinking they were going to get sick. Or they’d react in a way that wasn’t helpful or kind.”
Dispelling myths, creating connections
Ceballos said myths and misinformation — more common in communities of color — often leave patients feeling even more isolated. Seeing other patients openly discuss diagnosis, treatment and survivorship issues showed them they were neither alone — nor doomed.
“There’s such a sense of isolation with these diseases,” she said. “Seeing other people they can relate to is really important. It’s important for everybody, but there’s a contingent that has the belief, ‘Our people are going to die from it anyway, so what’s the point?’ So it’s very important for them to see people of color.”
Briant said when other patients watched the digital stories they were amazed not only that the people survived cancer, but that screening and early detection could make a difference.
“A lot of people think if you get cancer or diabetes, you’re going to die,” she said. “They saw that these people survived and were carrying on. So it was a positive thing to dispel the myth that cancer is always deadly. They also said, ‘I didn’t realize I should be going for screenings to see if I can catch it early if I do have it.’ People started thinking a different way.”
Patient stories can deliver information about prevention and screening more effectively than say, a pamphlet written in a foreign language, Briant said.
“They see people like them in the video and that makes it authentic,” she said. “I think that makes the message resonate with them.”
Briant, who hopes to offer more storytelling workshops in the Yakima Valley as well as the Puget Sound region, said not only are participants sharing their digital stories with friends and family — one cancer survivor said, “I’ve inspired them to get exams … to be one step ahead” — her team now regularly shares the stories via tablets at health fairs.
“The promotores use their own stories when they go out and do education in small groups,” she said. “It’s a way to build trust. It opens up the dialogue.”
Most of all, it offers the opportunity to connect and help those going through cancer and other diseases to know they’re not alone.
“They have other people to identify with, like, ‘Oh wow, someone else went through this,’” Briant said. “One woman said she put her story up on Facebook and someone in Italy who had a sister going through breast cancer saw it and reached out to her. She was really excited.”
Interested in watching the digital stories created in Sunnyside? Check them out on the Fred Hutch YouTube channel or contact the Health Disparities Research Center for a DVD.
Check out these online patient communities: Inspire, Patients Like Me, MyLifeline, Let’s Win, LVNG and Livestrong.
Diane Mapes is a staff writer at Fred Hutch. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine, and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at dmapes@fredhutch.org.
