Although these women’s routes to and through the mental health system varied, each found that their paths became a little less rocky and their skills and spirits were strengthened once they started working with CMHA Toronto’s Family Navigation and Support (FNS) program. 

Like hundreds of other FNS clients, they were able to take advantage of resources and support shared by family navigators Elly Litvak and Shannon O’Neill. They got specialized care for themselves as they cared for their loved one. And they got something just as important: hope.  

Caring for caregivers

Whether it was their first time or their fiftieth interacting with the mental health system, all four women felt a stew of emotions: frustration and fear, anger and guilt, confusion and discouragement.  

“I was very overwhelmed by [my loved one’s] illness [and] I didn't know how to get help,” Linda said, expressing a common sentiment. Once she spoke with Elly, she found someone who “could help me take care of myself in the process.” 

Discovering a resource that was focused on them was a revelation. None of the women had known a program like Family Navigation and Support existed.  

Once connected, they found something different from anything they had previously tried: “I learned that support was going to be made available for the family as a whole, which was completely different from anything I found in the past. Their approach was individualized to what the family and loved ones specifically needed,” Connie said.  

Family navigators help families make sense of the system and act as advocates for their loved ones, fulfilling a role that hospital staff do not have the time, training, or orientation to provide. (Read more about how this is slowly changing thanks to FNS’s collaboration with St. Joseph’s Health Centre staff). 

Connie’s family navigator, Shannon, “understood the situation. She listened, which was really important. Through her knowledge and her own personal experiences, Shannon helped guide us through what programs would be appropriate, what education would be beneficial.” 

Breaking away from the medical model

Connie articulated one of the important benefits of working with family navigators who have lived experience: “They are able to communicate from a variety of perspectives. There was greater empathy. Not just hand-holding but empathy that led to a greater understanding of what was needed and what might work – different approaches when the standard approach wasn't helpful.” 

This ability to communicate from multiple perspectives and break away from the constraints imposed by the medical model was essential for Sharon, a social worker who ran into the stone wall of bureaucracy as a parent. Unable to speak with her loved one or get any information, she was frustrated and angry. By the time she spoke with Elly, she was braced for battle. That battle never came. 

Instead, she found warmth, validation, and a perspective on mental health care that she’d never come across in her years of professional experience or academic training. Sharon describes the FNS program as “just so validating, smart, compassionate, caring, meeting me where I was. Non-judgmental.” 

“I've always hated labels,” she continued, noting that the program “validates behaviours. It's just an accepting place of differences. It was a total game changer for me,” Sharon said. 

While diagnoses, medication, and hospital care have their place, they are not only unhelpful for many people, but they can also be re-traumatizing. “The medical model of treatment is not the only model out there,” Connie said. “If the medical model has worked for you and your loved one, that's great. But the problem is the people for whom it doesn't work.”  

Connie described a common frustration with a hospital-based model of care: the lack of after-care once the crisis and acute phase has passed. “It leaves people rudderless,” she said. “You're left on your own, or the resources are ‘standard issue’ – a list of support groups you can contact or the next steps to be taken in terms of medical treatment, that sort of thing.” 

The importance of the lived experience

Elly’s and Shannon’s work is grounded in their own lived experience, which manifests in the instant rapport and trust they can build and the concrete ways they can advocate for their clients within the mental health care system. 

As just one example, Liz’s loved one “didn't want anything to do with the healthcare system,” common for those who have experienced the trauma of psychiatric hospitalization or who come from an environment where there is a lot of distrust or shame related to mental health issues and care. 

“Because Elly had that lived experience, [my loved one] started to listen, they started being able to trust,” Liz explained. “They agreed [to take] their meds when they heard what Elly went through, and that there's a possibility you don't have to be on those meds for the rest of your life.” 

With their lived experience, Elly and Shannon can normalize and counter the stigma that is so often attached to mental health diagnosis and treatment. Liz suggests that, for the person in crisis and for those, like herself, involved in their care, “a lot of times [we] feel different. [We] feel like it's a dirty word. And what Elly does is help you understand that it's not a dirty word. It's something that you just have to live through. Let's figure out how to do that the best way and that doesn't mean perfect. It means the best way for that individual.” 

Beyond listening: Learning new skills and using practical tools

Beyond empathy, understanding, and meeting families where they are, the FNS program offers concrete tools, including an eight-week family recovery course. The course gives people the opportunity to connect with others like them while they gain and practice new skills. It covers topics like understanding emotions, mindful self-compassion, how to set boundaries, and more. 

“I had been to some other workshops; I've spoken to other people who were kind and listened. But I didn't learn about how to take care of myself or my loved one. The program really stands out for that. It’s not only listening but giving us valuable tools and skills to help ourselves,” Linda said.  

One of the most important things Linda learned was how to validate her loved one’s feelings and manage her own emotions: “In the beginning, it just scared me. I didn't know how to respond and I didn't respond in a good way, a way that was helpful. Elly helped me to calm down enough so that I could learn to listen and validate.” 

For Sharon, the courses offered the community she was craving. “I availed myself of all of these courses because I needed that so badly. I needed to hear from other people going through this,” Sharon said. Like others, she cited their importance in addressing the guilt many parents have: “All of us incredible parents who were confused and asking ourselves, ‘how did this happen?’ Caring parents like me, meeting each other to feel that we weren't awful parents.” 

It was in the family recovery course that Liz learned that she was a fixer: “I never thought of myself that way, but as soon as they started talking, I went ‘whoa’. Bells went off.” Liz said her challenge was to learn how to create proper boundaries and that once she did “it changed everything. I realized it's okay to step back a little bit. I have the resources, I have the boundary setting, and I have the energy to do this. It's healthier for me, too. I see [my loved one] as an adult learning how to navigate their life and their mental health.”