Sharing Stories Comes with Responsibility

I attended the Hope for Hemophilia conference last weekend and met some wonderful people. I delivered a keynote address and shared my story of raising sons with hemophilia and holding on to hope. It was a special experience and I am grateful for the opportunity.

The day after I spoke, a man with hemophilia asked me how my sons felt about my sharing their stories. I told him that I never share anything without their permission. My sons have been transparent about their journey and allow me the freedom to share as openly as I do. But there is a deeper truth to this question.

While I am sharing stories about my sons, it is really my story that I am telling. My story as a mother, advocate, caregiver, and tireless woman fighting for what is best for her children. Our stories are intertwined, and sometimes it’s hard to see the difference between our paths.

If you are sharing your story, good for you! I am a believer in the power of storytelling. But there are a few things to consider as you share:

1. If others are involved, such as your children, loved ones, or friends, be sure to obtain their permission to include them in your story. In our world of immediate access to information, news, and social media, they may want to keep parts of their lives private. That is their right.
2. Do your loved one’s experiences need to be included for your personal story to have an impact? Maybe parts of the journey don’t need to be shared. Consider the importance of what you are sharing and how it will add to the overall story.
3. How will your storytelling affect your loved ones in the future? If your child is young and unable to give permission now, how will you offer protection for the future? Some writers don’t use their children’s names, instead giving them unique identifiers that relate to their personality. They may refer to them as “the athlete” or “the spunky one.” Maybe keeping their real names out of your writing and storytelling would be an added layer of protection.

Every chance you get to share your journey with someone is an opportunity to advocate for yourself or your loved one. You never know who will benefit from your words of experience and wisdom. They could change someone’s life.

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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.