MAHALIA: Nothing about us without us
“I think this is something a lot of people struggle with, especially young people… Finding a space where your own lived experience is viewed as expertise and where you are valid and you can talk about what your life looks like.”
Navigating the mental health system and searching for proper treatment for depression and anxiety was difficult for Mahalia and her family. Mahalia, only 13 years old at the time, had no prior contact with the mental health system. Her first contact with the system was overwhelming, intimidating, confusing and often not helpful.
“A year after my first contact and after being through a bunch of care providers, (I realized) oh wow, there isn’t actually just a magic thing to fix it all.”
Mahalia felt doctors made assumptions and prejudgements about her based on her patient file, age and the way she looked. Doctors and therapists often failed to listen to the way she felt about her course of treatment, dismissed therapy sessions and broke walls of trust. They invalidated her personal feelings and experiences and placed blame on her for not “getting better.”
“There was a lot of internalized stigma of mental health…Not wanting other people to go through that is my main motivator.”
She constantly heard from care providers that in order to “get better,” she needed to build herself a “life worth living.” As a 13-year-old, Mahalia struggled to understand what that meant and how to act on it.
“I felt like it was my fault that I wasn’t ‘getting better’… I blamed myself for this situation.”
Two years later, Mahalia had the opportunity to meet with an advisor who worked on the Youth Engagement Initiative at CAMH. Since then, Mahalia has held multiple positions on nearly a dozen different youth engagement activities. These positions offered Mahalia a space where her voice could be heard and her experiences validated.
She realized the importance of youth engagement, not only as an effective way to make experience-informed changes to the system, but also as a tool for mental wellness.
“If I could identify an actual moment where things sort of changed for me, it would be when I realized I wanted to come back and do something again, which was something I struggled with for a long time…There was something I was looking forward to. For another day. Another week.”
Mahalia sees youth engagement and peer support as an integral piece in her journey to improved mental health.
“If I didn’t have effective and meaningful youth engagement in the programs here at CAMH or any of the agencies I have worked with, if those were negative experiences, if co-ordinators didn’t take young people seriously, I would have stopped after that first meeting. Who knows what would have happened after that.”
Mahalia believes youth involvement in system development diminishes the power dynamics between patients and clinicians — something that is often intimidating and restrictive to young people throughout treatment. Amplifying the voices of youth may provide new opportunity to improve their own mental health, as well as eliminate barriers for other young people seeking services.
“I stopped being looked at as child who needs treatment or a sick child or a mentally ill individual…Instead I was looked at as a human being who has dreams and hopes and positive aspects of myself.”