Learning that you or a loved one has a rare or undiagnosed condition can be scary, confusing, isolating, and often forever life-altering.
“Where should I begin? How do I communicate what is going on with my friends, family, or healthcare providers?”
Many within the rare disease community do not know how great an impact they can have by sharing their story. Telling your story can be difficult, but this toolkit is intended to help you overcome the challenges by offering advice on ways to get started.
Sharing a rare disease story may feel like one more thing to worry about on a growing task list for managing a rare disease. While it’s common for novice and even experienced storytellers to have doubts about sharing a personal experience, this should not overshadow the importance of storytelling for the rare disease community.
Many people within the rare disease community have searched long and hard for a story that resembles their own, but with little success. The isolated nature of many rare diseases makes it essential to speak up. Your individual story could be invaluable to someone still searching. It’s also an important way to raise awareness about a disease and can help researchers, doctors, and donors understand the human dimension of the work they do and support.
“My main reason for sharing comes from wishing when I was diagnosed that there had been someone like me out there, especially another young adult, blogging about their experiences.”
With the majority of healthcare professionals unfamiliar with identifying and treating patients with rare diseases, most patients and their family members must rely on themselves or other patients and caregivers to learn about their own conditions.
For insights on the power stories hold and how one mother’s story of her daughter’s battle with Noonan Syndrome has led her on an unexpected path, read “Our Stories Make a Difference: Rebecca with Noonan Syndrome” on the RARE Daily. “There is power in our stories of our kids, adults, and families living with rare disorders,” she writes, “and through the written word, they teach, inspire, and raise awareness far beyond what we can ever imagine.”
Benefits to the Community and to the Storyteller
By telling a story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis or for someone who knows their disease firsthand. Medical terminology and data, though important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual rare experiences in a way that lets others connect.
“Storytelling gives data meaning,” says Sarah E. Kucharski @AfternoonNapper, writer and founder of FMD Chat, a Fibromuscular Dysplasia support organization. “Our stories are remembered because they help listeners to connect. To tell stories about our challenges and triumphs in coping with a diagnosis is simply an extension of connecting with one another.”
Finding common experience can break down feelings of isolation and build supportive networks. Outside the benefits to the larger rare disease community, you may also be able to save time and frustration by not having to continuously retell your medical history to others. To read more about obtaining and organizing your medical records, turn to the Becoming an Empowered Patient: A Toolkit for the Undiagnosed.
By taking time to prepare your story before sharing it with others, you can take control over the story you choose to communicate. Creating a story may also provide an opportunity to develop stronger communication skills.
Capturing our stories gives us a chance to reflect and process what we’ve gone through. We reclaim lost memories, create new meaning around the journey, and take ownership over our medical files. Many storytellers in the rare disease community have found the process promotes healing. Fashioning a story establishes a valuable record for you, your family, and the greater community.
“I have found it cathartic and healing to recount my journey as a caregiver/parent going through the death of my two sons and now my daughter’s rare disease [a rare neuroendocrine tumor and genetic mutation].”
The Rising Increase in Storytelling Opportunities
Where in the past it was extremely difficult to establish connections between patients (even within the same specific disease group or region), the Internet has changed that. It is fostering collaborations across borders and diseases. With many organizations working to improve patient access to information, storytelling opportunities continue to emerge. This is allowing patients to share insights, learn from each other, and work together.
The introduction of Rare Disease Day in 2008 marked a significant development in the growing strength of the rare disease community’s voice. The annual selection of a theme for the day provides a rallying point for patients to join together. The recent addition of an official video helps unify the message, while at the same time, encourages individual stories to emerge. Online patient support communities, including Ben’s Friends, Inspire, PatientsLikeMe, and RareConnect, are expanding the areas for linking patients through their stories.
We are also seeing the establishment of online news outlets, like the RARE Daily and Rare Disease Report, which are produced specifically for a rare disease audience and cover the latest rare disease stories. The growing movement towards patient-centered care, with an emphasis on the patient voice, is resulting in the inclusion of presentations from patients and caregivers at medical conferences and during regulatory drug reviews.
Self-publishing options and new communications technologies, especially smartphones and tablets, also make it easier to create and communicate a media message. Having a story ready-to-go allows you to respond to the opportunities that arise, such as an expedited drug review, a call for funding proposals, or to set the record straight when public misrepresentations of a disease experience occur. Julie Flygare, founder and president of Project Sleep, knows this all too well. After Honda featured a negative stereotype of Narcolepsy in one of its commercials, Flygare started a Change.org petition urging the automaker to pull the ad.
“There are times when your disease or condition may be painted in a light that is offensive or inaccurate in the media or pop culture,” says Julie Flygare, JD, president and founder of Project Sleep and Narcolepsy patient advocate. “While you can try to fight each misrepresentation on their websites through comments or sending emails, they may not be answered. It can be very powerful to return to your own site where you are not on the defense, but on the offense, sharing your story from a place of confidence and positive energy—as opposed to reacting in a state of negativity.”
Having that story in your back pocket is one of the critical tools for becoming an empowered patient advocate. See the Perspectives to this Toolkit for more advice and resources from Julie Flygare.