1. Access and review your own medical file.
How did physicians perceive your health at different stages? Take notes on what is recorded in your file. Try to verify key dates and the order of events in your health history.
2. Interview the people who know you best.
How do those around you understand your disease? This may include speaking with your family members, caregivers, friends, and health team. Find out what they’ve witnessed, felt, and gone through in relationship to your health. They may be able to shed light on the events you have difficulty remembering.
“Not every child has the opportunity to interview their parents, but if I hadn’t asked so many questions I would never have known many things about my family and the story of my health.”
-Emma Rooney, Gaucher Patient & Storyteller
3. Create a timeline of the significant events in your life.
Start from the day you were born and don’t be limited by focusing solely on your medical history. Chronologically track your memories, movements, and milestones. Remind yourself how old you were when these various events in your life happened. You may wish to research and include significant national and global events for your rare disease community or rare diseases in general. For example, the founding year of a patient organization, a research advancement, or the establishment of a new law or policy. When you’re done, examine how your events overlap and consider how they affected each other.
4. Search for artifacts.
Dig up and gather “stuff” that stands as a visual marker for each event on your timeline. Your old photographs, home video footage, artwork, journals, letters, clothing, medical equipment, awards, and saved notes from a presentation you delivered can all trigger memories, enrich your research, and be potential material for later use in illustrating your story.
5. Map out your ideas.
To help make sense out of your ideas, try building a visual mind map for direction. Imagine a web-like structure of connecting ideas. For example, you might start by writing “My Story” at the centre of your page with a circle drawn around it. With this central topic in mind, record ANY initial ideas you think of by drawing branches from your main topic for each new thought. Later you can add branches from any of your secondary ideas, and you can also draw arrows to show connections between ideas. When you are finished, be sure to step back and look at the connections you’ve made. You’ll likely discover new ones to add as well. Mind maps can be used as a tool for narrowing down the focus of your story, picking the key elements of your story, and also for planning the various stages of work on your story.
6. Imagine your story to be a gift.
Who will receive your story? Visualize this audience throughout the development of your story as you pick what to include. Stay focused as you work by dedicating what you’re doing to a particular person, group of people, or goal you hope to accomplish.
7. Tell your story in just 6 words.
This can help you focus on what you most want to say right now. Keep in mind that your story need not cover your whole life or every aspect of your health. You may be surprised to uncover that you have many stories to tell, but remember that they don’t all need to be told at once.
8. Make a storyboard.
Imagine that you get to be the star of your own comic strip or movie. Rough-out a story, putting each new action or event on a separate page or slide. By creating a storyboard, you can easily move the parts of your story around and later also remove sections you see aren’t necessary. If you have access to presentation tools like PowerPoint, you can use such a program as your storyboard tool. Drawing your storyboard panels by hand can be just as easy and may be more fun. Try to create a rough visual representation for each page. You might draw a stick figure, use one of your found artifacts, pick clip art, or quickly search for representative images on the Internet. Having a storyboard helps you to explain your project to others and to get feedback and support with it. Your storyboard might just be a tool for quickly drafting your early ideas, but you can also keep polishing it until it captures all the elements you will use to make your final story.
9. Tap into your own creativity and partner up with the talent around you.
You may not already consider yourself to be a storyteller or an artist, but a story project can be a great opportunity to pursue your artistic interests and even try out new ones. Consider what you enjoy doing when deciding what medium to use in creating your story. You can also work with creative people and will likely find many skilled individuals in your immediate circle. An openness to share your story will often be rewarded with generosity: people will be willing to support you in getting your voice heard and freely contribute their talents to your project.
“The experience of collaborating on my sister’s story allowed me to unearth and express my own feelings, in having watched Emma go through some of the difficult things that happened to her, which in our family, weren’t always openly discussed.”
-Megan Rooney, Artist
Illustrator, Emma’s Garden
10. Engage a trusted Medical Advisor.
While our stories may not be intended as medical advice, a medical advisor can guide our research, simplify complicated scientific information, and help us to be as accurate as possible on the medical side of our story. This input is especially helpful if we want our stories to touch those working in the healthcare sector.
“I was delighted to have a former patient invite me to participate in her story project. I believe it’s important to exchange stories with young patients and families, as stories are a wonderful way to support and empower them to deal with some of the challenges they may face.”
-Margaret Mackrell, RN, BHScN
SickKids Hospital, Toronto
Medical Advisor, Emma’s Garden