I recently had the opportunity to spend the afternoon with a group of teens from our local bleeding disorders organization, HACA, which stands for Hemophilia Association of the Capital Area. Some of these kids have gone to camp together for years, and some were brand new to the group. But like all teens, a little pizza and some foosball started them talking – nonstop. I was reminded of so many similar gatherings from my teen years, none of which had anything to do with a medical condition such as hemophilia or von Willebrand disease.
On this particular day, we came together to talk about storytelling. Storytelling is hot – from edX courses to Forbes, and from TED Talks to Khan Academy — and ideas for how to tell your story (and document it) are nearly boundless.
It is vital for teens with bleeding disorders to think of themselves as advocates, from speaking with elected officials to managing medical situations and school. As they move to their post-high school world, advocacy is an essential skill. For siblings of teens with bleeding disorders, the role of storyteller advocate is equally essential as helpers to their affected sibling, and to make sense of the impact on their own lives. The power of this particular group of teens rests in the comfort they find in one another. While bleeding disorders may have brought them together, it is their common interests that keep them talking and sharing.
Because teens love to talk as much as they love tech, we worked with the StoryCorps app to bring their stories to life. There are as many platforms to record stories right now as there are platforms telling us about storytelling. For our teens, StoryCorps gave them a chance to practice interviewing and recording skills. It also gave them the opportunity to erase-download-save, and to laugh — showing the world that the blessing of friendship is often the best storyteller of all. A gifted storyteller crafts a narrative through practice; talented storytellers are made, not born.
For teens who are learning to navigate the in-between time before young adulthood, time to practice telling their own stories is crucial to independence. The joy of watching them share what having a bleeding disorder means in their lives rests in learning something new about them: They don’t always see or feel the experience as we do.
We’ve all worked to build this comfortable community from which our teens draw strength. Let’s give them time to enjoy it, eat pizza, tell a few stories. They really are practicing the best life skills they will ever need.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.