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St. Joseph's Health Centre Toronto

“Giving as much power as possible” to the voices of Patient and Family Advisors

Michelle Rhodenizer had never experienced significant health issues until she was 37. It was then that stress led to a breaking point and a diagnosis of major depressive disorder, generalized anxiety and panic disorders – what she describes as the most challenging time in her life.

“I reflect back and believe I was burned out from increased work demands, three kids with individual needs, family issues, competitive sports commitments,” she said. “There was a moment where my family found me passed out, suffering from a panic attack. It led to years of medication, counselling, difficult and frustrating experiences and ultimately a lot of learning about myself and my triggers.”

Rhodenizer was one of the Patient and Family Advisors (PFAs) participating in a recent storytelling workshop series at Unity Health Toronto that was designed collaboratively by our quality and education teams with PFAs. The goal was to give these individuals additional skills to help them as they shape their stories and share their experiences with the health care professionals they partner with on projects and committees.

“It’s about giving as much power to their voices as possible,” said Lindsay Beavers, a collaborative learning specialist at St. Michael’s. “Patient and Family Advisors are so generous with their time and help us every day get a better understanding of how health care impacts the patients and family members going through it. This workshop series was about giving them tools and resources to improve their own experience through the process.”

At the workshop, Rhodenizer shared her story with the group, hitting on the emotion of her diagnosis, the impact it had on her children and family and what her experience with the health care system throughout all of this was like. She’s shared bits and pieces of her story through the work she’s done as a PFA but this was the first time she felt empowered to share it all at once.

“Working on my story was certainly a healing experience. It was the first time I had ever stepped back and looked at the impact of the past four years as a whole. I felt I was ready to share but I had not expected the depth of emotions that surfaced,” she said. “It was hard but I’m glad I did it – and now I’ll continue to share my story to help others.”

That’s exactly the outcome Janet Rodriguez hoped for when she started working with the team organizing this event which included PFA Jennifer Schultz, experience and engagement specialist Stephanie Mooney, patient education specialist Katrina Grieve and consumer health information coordinator Tedi Brash. Rodriguez is also a PFA and has experience as a facilitator and trainer – and also in reframing her own story.

“I had an illness that paralyzed my body and impaired my ability to think, read and speak,” she said. “The power of storytelling lies within being able to take all of that ugly experience and repackage it in a way where I am at the centre and in control and can say what happened to me, how it impacted my life, how my health care team helped me recover and what else we can do to help ensure patients receive the care they need.”

Rodriguez has shared her story many times and said she sees the impact it can have – medical students come up to her and say they will never see a chart as just a number but will consider the patient and their own trauma and experience behind it. She goes one step further, not just sharing details about the emotional and physical aspects of what she went through but also the financial impact and how it affected her family.

“I want people who hear my story to understand that the 10-minute interaction they have with their patient needs to start with listening to understand – they need to see the patient as a whole person and how the intervention they put in place may have a life-long impact,” she said.

“Our stories are powerful and can change the way health care providers build systems and interact with patients, so this workshop was really about helping others translate their own – often emotional and painful – story into a narrative that can be used as a teaching tool.”

Stay up to date on news, health tips and more from Unity Health Toronto at UnityHealth.to/newsletter.

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