I have been guilty of sharing my story with whoever asks me: media, conference organizers, foundations and health organizations. I did this for many different reasons: I was flattered to be asked; my voice had often by suppressed in clinical settings, so finally I had a chance to be heard; telling my story was healing; I felt pressure to speak up for those who couldn’t; I wanted to use my story to make change in the world; I wanted to inspire others to be more compassionate and kind; I wanted to be liked; I am not (that) scared of public speaking; I felt obliged to give back to the organization that was asking. I wasn’t that choosy and I mostly said yes, yes and yes. I was a cheap date.
No more. A wise friend taught me to be selective. This is my call to action for other patients and caregivers who are asked to tell their story: Be picky. You are worth it.
I gave a talk last night to my friends at the Rare Disease Foundation about sharing your story in public forums. My premise was: you get asked to give a radio interview or a talk about your child’s rare disease. How do you respond?
My suggestion is to first pause and think: Why am I telling my story? Is my intention for sharing my story in alignment with the intention of the person or organization asking to hear my story? Can they be trusted? Have they shown me respect?
If these answers are no, then say no.
Is your spidey sense tingling? Is your gut telling you something beyond just the regular anxiety that comes with speaking?
If these answers are yes, then say no.
Here’s an easy assessment: is everybody else telling their story paid to be there and you are not? Then for sure say no. That’s just plain old inequity and that’s not fair. Don’t do paid work for free.
Do you feel ready to tell the hard parts of your story in a constructive way? I recently was asked to share my cancer story at a conference. Upon reflection, I realized that I am still terribly angry about the way I was treated in the hospital. I have not fully processed the medical and emotional trauma that went along with my experience. It would not have been healthy for me to stand up before an audience and share my story in public, so I said no.
Consider if you are a family member: are you sharing your own story as a caregiver or your loved one’s story? If it is your loved one’s story, is this your story to tell?
This pause to think about and assess requests is new for me. I still believe it is only through stories that we will change this world. I’ll continue to share on my blog, as this is a platform I can control. I’m my own editor – my quotes won’t get taken out of context here and I am in charge of my own headlines and messaging. I vow to find spaces that are safe to share my patient and family story. I will work only with organizers, interviewers and audiences who recognize it is an honour to be given a glimpse into a patient or family’s life and who behave accordingly.
I sound jaded, but this is hard-fought wisdom. Our stories are a version of ourselves. They are a gift. Don’t give yourself away.