Patient Storytelling

[Joan Tu]

Hello, I have a special interest in patient storytelling of lived and illness experiences.

I am currently working on a few small projects related to patient storytelling and I would like to know if anyone has interest in these initiatives or has undertaken anything similar. I would also be interested in any resources or opportunities for patient storytelling. At the Foundations for Patient Partnering workshop, some of the participants were interested in talking more about more allergic contact dermatitis misdiagnosis story, but we did not have space in that session to explore it further. However my story and what I have learned is something I can offer to patients in an educational or storytelling context.

I am interested in making a short documentary about my misdiagnosis and healthcare story which may be helpful for health professions education. I am unsure about being able to secure funding for it. If anyone has experience or resources related to something like this, I would appreciate any input.

I also have authored and illustrated two children's books about a character with Allergic Contact Dermatitis. The first book was included in the Green Chemistry library at gctlc.org and the second book is funded by Calgary Arts Development. I have a budget to send out free copies of the second book to people who work in community settings like libraries, schools or clinics, to share with their organizations or online audiences. If you would like a free copy of the book, please feel free to send me your mailing address where it can be shipped. A summary of the book is below.

The Green Soap Girl Goes to the Beach:
Students will be introduced to the experience of a person living with a contact allergy, contact dermatitis, and photosensitivity. The importance of universal design, accommodations, and ingredients in personal care and cleaning products may be discussed in relation to disability, equity, and inclusion. In this book, Alice experiences difficulties while navigating misunderstood skin conditions which provides context for discussion on supporting individuals with sensitivities or allergies with strength-based solutions. Two pages of the book are dedicated to discussion questions for educators, parents, and students to better understand the experiences and medical concepts presented in the story.