Safe Spaces for Patient Storytelling

This is the second in a series of articles about Patient Storytelling. 

Patients share their health care stories in public for many reasons: fundraising purposes, media exposure, advocacy efforts, and to educate or to support quality improvement projects. We even tell a version of our stories when we simply submit a biography or introduce ourselves at a meeting.  

 I’ve had many experiences writing and speaking my own story as the mom of a young man with Down syndrome and as a recent breast cancer patient. I’ve spoken with the media for advocacy campaigns, explained parts of my story at committee meetings, lectured at grand rounds and presented at health conferences. Most of these experiences have been positive, but some have gone side-ways.  

At one memorable conference (that I’d rather forget) was a talk I gave about kindness in Emergency Departments to a group of clinicians. When it became clear that I was standing before a hostile audience, the moderator should have thrown a coat over my head and guided me off the stage. I was left crying in the conference hotel corridor afterwards.  It was a sad state of affairs. 

From that experience I learned how to protect myself as a speaker. Before then, I used to say ‘yes’ to every opportunity. I was eager to share my patient wisdom, flattered to be asked and sometimes I felt obliged to speak. Now I am choosier about what events I participate in. 

It is important to remember that it is an honour for others to bear witness to our patient stories. Today if I feel as if I’m not being honoured or respected, I simply say no.   

There can be red flags that pop up with speaking opportunities. Give yourself permission to ask for what you need. If there are too many warnings, it is okay to walk away.  

Here is what a safe space for storytelling looks like, based on my experience as a speaker and as someone who has coached patients and families to craft their own stories. These tips are handy for staff who are engaging patients to share their stories. While I believe that stories can be powerful agents for change, I always ask staff to consider: are you using patients for their stories, or are you fairly and honestly using patient stories?   

Beforehand 

Understand the expectations of the event, beyond a “come tell your story” request. Is the reason you share your story in alignment with why the organizers have approached you? Ask questions that will help you craft your content like: Who will be in the audience?  What are their greatest barriers to understanding patient stories? What are three key messages you want them to take-away? How do you want them to feel afterwards? 

The best organizers also offer a main contact person to work with you and to help you prepare. 

Logistics matter too! Is it a virtual or in-person event? What is the compensation offered? Will there be someone to help with technology?  What is the dress code? Will someone be introducing you and/or moderating questions? For in-person events, will your expenses be covered?  What is the transit or parking situation?  If the organizers don’t offer up these details, ask them!   

During 

Know that nerves are a part of sharing your story. I get anxious before I speak every single time, and I’ve been sharing my caregiver and patient story for almost twenty years. As Maria Shriver says, “Anxiety is a sign of your own daring.” I always have speaking notes and don’t memorize my talks. Do whatever you need to do to support yourself when public speaking.  

Remember to breathe! You know your own story best and the audience is there to hear what you uniquely have to say. 

Afterwards 

Brené Brown has termed the phrase ‘emotional hangover’. This is the exhaustion we feel after we make ourselves vulnerable. I don’t schedule anything after a talk and often go for a walk afterwards to unwind.  

Again, good organizers will check in after your talk to see how you are doing and ask how the experience was for you.  Don’t be shy to ask them to share audience feedback with you. 

The power of storytelling is this: if we touch hearts, we can change minds. Never forget that both you and your story deserve to be honoured. 

Author bio: 

Sue Robins is a health care activist, speaker and author. She offers virtual Power of Storytelling Workshops storytelling to both patients and staff groups. www.suerobins.com.   

April 2022

Share on facebook
Share on twitter
Share on linkedin
Sue Robins leading a talk about kindness at Holland Bloorview Kids Rehab Hospital with Beth Dangerfield.