It is not secret that I believe in the power of storytelling in health care. I have been coaching patients, families and staff to craft their stories for a long time.
Telling your story is a way to explain your experiences. There are many ways to do this: photography, music, dance, public speaking and - what I find most helpful - writing.
Storytelling helps me make sense of random events especially in difficult times. In this pandemic, crafting my own story and reflecting on my own experience has been important. Sharing stories helps me validate and process what has happened. I write and post stories publicly for advocacy reasons and to encourage others to speak up. I cannot ask others to tell their stories if I am not willing to share my own stories myself.
As Audre Lorde says, “Your silence will not protect you.”
Unfortunately health care staff have been muzzled and discouraged from speaking up about their own experiences. Health administrators have always quickly squashed constructive patient stories, and this is even more true today for health professional stories. The public health officials talk only in numbers of cases and deaths and not people.
The public health communications strategy in Canada has failed us in part because officials are not supporting storytelling. As a result, the pandemic does not seem real to many people. How can you feel compassion for a number?
Slowly, as the pandemic has worsened here in Canada, health professionals, patients and families are starting to break through. Kim Crevatin spoke up about her parents’ experience with a restrictive ‘visitor’ policy in a New Brunswick hospital. Gritty Nurses, Amie Varley and Sara Fung, have been talking about paid sick days, mental health and racism in health care through the media and their podcast. Dr. Michael Warner, a critical care physician in Ontario, has been speaking up in the media about the dire situation in the ICU. Dr. Amy Tan in BC has been vocal on Twitter about public health policy and racism. And I have been openly sharing the experience of getting our son with Down syndrome vaccinated to highlight the stark health inequities for people with developmental disabilities.
There are so many self-advocates and families we know from the Ready For My Shot campaign who have shared their stories with the media: all the self-advocates who sent in stories with their selfies, siblings like Jihan Abbas + Helen Ries, Alexandre Grant, Yona Lunsky and mothers like Sharon Willey, Evelyn Lusthaus, and Rissa Mechaly.
Do you know how much gumption it takes to speak out in the media? A LOT. These people are speaking up, even if they are afraid.
Many people are still silent. I’m not going to speculate why that is, but I do want recognize that being in the public eye is hard work. I don’t want to be Pollyanna about what being vocal takes from you. There is a dark side to it.
Sharing your story in a public setting opens yourself up to a new kind of vulnerable. It is hard enough to share a painful story, but I can guarantee that some people will take issue with your story and attack you personally. As the new adage says: ‘don’t read the comments.’ Social media is like the old-school letters section in the newspaper, except that on Twitter and Facebook, people can offer criticisms instantly, without taking the time to type out a letter, putting it in an envelope and mailing it. I’ve been heckled many many times when I've shared my stories, even when my topic was about kindness and compassion.
Pile onto that, emotions are heightened in these pandemic times. Some folks are very angry (for their own reasons) and are waiting for an opportunity to lash out. Your story might be their reason. This reality keeps people silent.
Nobody’s experiences are going to be exactly the same. But just because someone is brave enough to speak up, it doesn’t mean it is ok to attack them because your story happens to be different. One story is not representative of all stories.
Harsh critics are often those who, as Brené Brown says, aren’t in the arena. They prefer to hide in the shadows and snipe instead of stepping into their own truth. I'm positive someone like this will take issue with this essay. My only response is this: my experience does not negate your experience and you are welcome to use your platform to tell your own story too.
I will keep encouraging storytelling. I commit to amplifying health care stories and to keep coaching folks to craft their own. I will answer emails and messages when people share their own private stories with me.
If you are a storyteller, especially in the public eye, I want to remind you of this:
I’m not going to lie to you and tell you that it is easy. I’m not going to tell you to grow a thick skin. I am going to remind you that you are a bad ass for standing fully in your own truth.
Please protect yourself. Figure out how to shake off the openly mean comments. On social media, mute or block people who attack you. Pause to take in the positive comments instead of brushing them off. Find other courageous storytellers and lift each other up. Learn from constructive feedback.
Your stories mean more to people than you will ever know. Never feel forced to share more than you want to and stick to your boundaries. Take a break when you need to, because the weight of speaking up during this pandemic can be crushing.
Most of all, brave storytellers, please allow yourself some grace. This pandemic is going to turn with your stories, and you are fiercely lighting the way.