A lived experience perspective on overcoming mental health system challenges

I entered therapy by the age of 13, and by 15 I was heading into more-intensive forms of treatment, such as remote therapeutic wilderness programmes and residential boarding school. I did not have a single condition as I was experiencing depression and substance-use challenges, and was dealing with being differently abled owing to dyslexia. As I grew up, I continued to face mental health challenges. Today, my lived experience is defined by a compounding set of mental health challenges and the subsequent navigation of mental health systems as a young person in the USA.

Credit: Lian Zeitz

I found the whole process to be an immense struggle, often leading me into cycles of shame, self-doubt and fear of what would happen to me in life. At the time, mental health was heavily stigmatized and my struggles in school embedded a set of messages in me that life was not going to work out. It was also a time when behaviour modification approaches were being used rather than present-day strengths-based approaches and positive psychology. It was a scary time. I was often able to pick up on which staff cared about me as a person and which staff put me in a box of someone who is less than the typical young person.

There were aspects of diagnosis that also provided a sense of relief because the issues that I was experiencing were pinpointable. My inner healing was also connected to being in recovery with other people, many of whom ended up passing away too early or are still in cycles of treatment. Through these experiences, I saw a treatment system that was not cultivating life-long healing and was often leaving people stuck in cycles of unwellness.

Too often, research has overlooked intersectional realities and lived experiences of those facing mental health challenges. As a result, much of mental health research lacks the deep-rooted wisdom that comes from those who know firsthand what is truly needed. This oversight leads to interventions and treatment practices that frequently fail to achieve their aims and, at worst, perpetuate systemic harm. I see my engagement in mental health research as my ethical responsibility to help to rewrite the legacy of harm and trauma that research has often inflicted on those with lived experience. This work challenges the traditional hierarchy of knowledge, valuing lived experience as equally — if not more — important than academic credentials. It is a necessary step towards reconciling past wrongs, redefining what knowledge matters and recognizing who deserves to be heard. It also fosters a healing process that extends beyond mere treatment.

Improving representation and inclusion should be the minimum goal. The ultimate goal is research practices that cultivate healing, trusting and healthy relationships, and ultimately outputs that serve those most in need. Researchers should always be asking the question of what needs to happen that gets researchers closer to ethically involving people who are most excluded. There are a few learnings I have found in this area.

First, research teams should be mandated to spend focused time accommodating people’s needs in ways that increase belonging and inclusion in research, such as by prioritizing relational trust and transparency over speed; advocating for the perspectives and insights of lived experience participants to be centred; and allowing folks to participate in their preferred language. Second, researchers should be educated on power, decolonial methodologies and epistemologies of knowledge. Representation that sustains oppressive systems will not get researchers closer to more-just research processes. Third, the budget of lived experience components of research should be increased. Too often the lived experience workstream is used as a box-ticking exercise and is not adequately resourced, which makes engagement with individuals with lived experience tokenistic.

Engaging in research in a lived experience capacity is a vulnerable, challenging and turbulent endeavour. Some potential harms that I have encountered include a sense of belittlement and shame that arises when I was engaged with in a tokenistic manner, a sense of moral injury from concern that a well-meaning effort will actually lead to further harm for individuals dealing with mental health challenges, and brutalization from encountering research processes and researchers who are not trauma-informed and who replicate colonial tendencies in modern research.

To mitigate these potential harms, I recommend that individuals with lived experience establish a ‘crew’ that offers a safe haven to process complexity and hypocrisy openly. It is also important to go into research with tools for self and collective care because challenges inevitably arise. Despite potential harms, the opportunity to recalibrate research to be more inclusive and representative is worthwhile.

“I saw a treatment system that was not cultivating life-long healing and was often leaving people stuck in cycles of unwellness.”

I believe that engaging as a lived experience expert in research is related to coming into one’s true power, loving the experiences that have shaped who someone is, and channelling life’s challenges into serving others. If you are considering collaborating with researchers, I hope you can go into it knowing that you offer immeasurable value that cannot be taken away. Additionally, connect with others who have served in a lived experience capacity in the past; they will most probably be glad to provide guidance on your journey.