I preach about the importance of telling our stories. But now I want to talk about NOT telling our stories.
Sharing our stories publicly can be traumatizing beyond public speaking jitters. That is because we are being bad-asses (credit to Brené Brown for that term) and if you are a patient, caregiver or advocate of any kind, you are often telling stories about the hardest moments of your life.
Whenever I tell the story about how my son's Down syndrome diagnosis was disclosed (badly), I am immediately transported back 18 years ago to that clinic room. I still remember what shoes the doctor was wearing (tan desert boots), exactly where I was standing and how that room smelled. Even typing this out, I feel a little pit forming in my stomach.
It is important for me to share this diagnosis story with medical students and physicians in order to have conversations about how to disclose diagnosis. Beyond just imparting best practice or a checklist, adding my own personal story helps people remember. Stories stick in the way that more academic learning does not.
I was asked to give a talk about my patient experience at a conference a few months after my breast cancer treatment was finished. I immediately said yes, and then spent weeks fretting over that decision to speak. My time at the cancer hospital was new to me, still like a gaping raw wound that had not started to heal. I had not had the time to even process what had happened to me, never mind get up on a stage and talk about it to a health professional audience which included some of the very same people who had caused me harm. It was an opportunity to educate folks and I felt obliged to do it so that other people didn't go through the same ordeal as I did. But I felt so uneasy about it, I listened to that unease and ended up withdrawing from the conference.
I wasn't able to speak to a live audience about cancer until a full two years later, far away in Australia, surrounded by organizers who were also good friends and who made sure to provide me with a safe environment.
There are definitely reasons to NOT tell your story. Here are 11 ways to mitigate the trauma that can come from storytelling.
Saying No. If you feel uneasy, beyond public speaking anxiety (which is totally normal), then it is okay to say no, or to withdraw after you've said yes. It is your story and you own it, not the organizers.
The Lure of Obligation. I've seen organizations like hospital foundations lean specifically on patient and family speakers who feel obliged to share their stories for fundraising purposes because the hospital saved their lives or their children's lives. These organizations can be guilty of over-asking people because they know they will say yes. You can say no, even if you are grateful to an organization or group of people. There are other ways to say thank you and likely there are other speakers they can ask.
Balancing Stories. To temper the trauma I feel telling my son's diagnosis story, I tell a positive story about how he was treated when he was a baby. Telling a good story to counter a bad story settles me down. I also rehearse my more emotional stories -- somehow that helps me practice the tears out of them. That being said, it is natural to feel emotion while telling a difficult story! If people expect you to be a robot when talking about challenging experiences, these are not your people.
Use What Tools You Need. Reading a story that you've written is sometimes easier than telling it off speaking notes or by memory, as your words are more in your control if they are written down. As a speaker, I sometimes feel pressured to perform like a TED Talk speaker, but this is bunk and you are allowed to use any tool you need to get through the telling.
Different Ways of Storytelling. Stories do not always have to be shared in a live setting, in oral form -- easily the most anxiety-provoking of all settings because of the public speaking factor. Alternatively you can offer to write your story down and share it in written form if that's more comfortable. Consider other ways to share stories, like through photography, music or visual art, which may help remove you a bit from a personal story. Or ask if you can video record your story and share it so it can be recorded on your own time, outside of a live setting.
Co-Presenting. Asking to co-present with someone else sharing their story can help minimize the spotlight on you and your story and take some of the pressure off from being the 'only' voice. It is best to provide a diversity of experiences anyhow. A similar effect can come from co-presenting with a health professional who tells their story from their perspective. There is comfort to having company on that stage or Zoom call. I'd also recommend keeping in touch with other storytellers -- to build community of support with other folks who do the same work.
Zoom. Speaking of Zoom, I find storytelling during COVID particularly disconcerting because there's nobody there to reassure me right before I go on and then afterwards, I click 'end meeting' and that's it. I can sit there feeling used. With in-person events, people would often come up to me afterwards and give me feedback, which reassured me that I did a decent job and that people learned something from my story. This aspect is sadly missing from Zoom. For virtual events, you can ask organizers for prep meetings and a debrief to make sure you feel supported, or ask that they share feedback from the audience with you so you have some sense of how you've done. Another option is to ask the organizers to stay on the Zoom afterwards with them to immediately have a conversation.
Whose Story Is It? I've grappled over the years about whose story I am telling. Part of my discomfort was that I was telling Aaron's story, not my story as his mother. I've adjusted my storytelling to I tell my own story, not his. Here is a short essay I've written about the ethics of telling stories.
Working With Organizers. Isabel Jordan and Julie Drury have influenced my thinking about storytelling. I've been guilty of being a little puppy when people ask me -- always eager to please and saying yes, even when there were a million red flags from the organizers that told me that I was not going to be treated well as a speaker. Here's an essay I wrote called Don't Give Yourself Away about listening to your intuition when working with organizers.
The Media. Storytelling in the media is a whole other animal with an extra layer of stress piled onto it. I've said no a lot in this setting -- when I've felt others could tell their story better than I could, when other stories were more relevant than mine, when it was a news outlet I wasn't comfortable with because of their politics. There is a lot of pressure to make a decision right away if the media contact you, but it is absolutely okay to take some time to consider the request. Some kinds of media - live on camera or radio are harder than others like taped interviews - so keep that in mind too.
Supporting Other Storytellers. One of the most rewarding things I've done is support other patients and families (and staff) to tell their stories. I believe it is important to create sustainability to build storytelling skills in other people. There are others ready to tell their story too. If I say 'no', I know that leaves room for other people to say 'yes.' This is when the ego comes into play...I've realized that I am not the only person with a story to tell. I am deeply satisfied with this work to coach others to tell their stories in speaking or written form.
Obviously I have a lot to say about this topic of sharing stories. I've been doing this work for over 15 years now, and I've had many wonderful experiences and a few horrible ones. I have a whole section on storytelling in my upcoming book, Ducks in a Row: Health Care Reimagined.
I also offer storytelling workshops to organizations - for both staff audiences on Honouring Storytelling - how to create safe spaces for patients to tell their stories, and for patient and families about the Power of Storytelling. Please be in touch with me if you'd like to chat more.