A lived experience perspective on responses to trauma
When did you first suspect you had a mental health condition? Tell us about your mental health experience.
This is a really interesting question. I resist identifying as having a ‘mental health condition’ because I view this identification as a form of medicalization and pathologization in which important context can be lost. I self-identify as being a complex trauma survivor and I view my experiences of distress as natural responses to the systemic and interpersonal violence that permeates the lives of many individuals marginalized by intersecting experiences of poverty, racism, sexism, homophobia, transphobia, Islamophobia and other forms of oppression.
Credit: Yasmine Simone Gray
The first time I felt a distinguishable shift within myself (for example, shifts in my mood, my thoughts or my perception of the world) was as a teenager in the midst of surviving an abusive family dynamic. Personal and collective experiences of racial trauma have also led to distinct shifts that I recognize in my body. The compounding and cumulative effects of the various forms of trauma I have survived shaped how I move through the world today.
What support or treatment did you receive for your mental health? If you received a diagnosis, can you tell us about that experience?
My experience with psychiatrists was that I was either seen as ‘too high-functioning to require support’ or ‘too complex to receive support’ — sometimes simultaneously. My experience with counsellors and therapists was hit or miss. The most valuable therapeutic relationship I had was with a counsellor who listened to me and gave me space to ask questions and self-define what I felt the problem was and what I wanted as a solution. In contrast with this experience, a memory I will never forget is the psychiatrist who told me — among other things — that I’d never be able to complete a university degree program.
As a young Black girl, when it came to treatment and diagnosis, I frequently encountered medical and mental health professionals making definitive conclusions about my life before it had really even begun. Unwillingly, I found myself on the receiving end of two stereotypes: the ‘strong Black woman’ stereotype that characterizes Black girls and women as inherently resilient, or the ‘angry Black woman’ stereotype, undeserving of care until I could ‘correct’ the overwhelming and undesirable markers of distress that prompted me to seek help in the first place. It was a very limiting and impossible dichotomy to exist in.
What are the potential harms of participating in research as a lived experience expert? What can be done to mitigate these harms?
A myriad of potential harm can arise from participating in research as a lived experience expert. One of the main risks is tokenization. I worry about how my views and my language might be adopted, especially if the research framework is grounded in a traditional medical model of mental health. My concern is that my perspectives, which challenge the medicalization of distress, might be tokenized or used to reinforce the same system I’m critical of, rather than lead to systemic change.
To mitigate these harms, I do my best to ask questions before I join a research project so that I can assess the extent to which alternative frameworks are being used or considered with an open mind. In an ideal situation, I’d love to work with other researchers who are open to co-creating the research design and making room for critical perspectives.
Once I am involved with a project, it’s vital to me to know what my boundaries are (in terms of what I share and how) and make sure that I stick within those boundaries. I also believe people with lived experience have a perspective that is hard-earned. Especially in mental health research, people usually become lived experience experts because they had an experience or an encounter with a system in which their needs weren’t met or they ‘fell through the cracks’, as they say. Researchers working with lived experience experts should remember that they are working with survivors and continually reflect on what that means in terms of power dynamics, meaningful engagement and support.
“Researchers working with lived experience experts should remember that they are working with survivors and continually reflect on what that means in terms of power dynamics, meaningful engagement and support.”
What advice do you have for someone with lived experience who is considering collaborating with researchers as an expert?
Remember the value of your story. Even as a person with lived experience, you are allowed to have privacy!
Researchers with lived experience bring important perspectives to teams regarding their experiences in systems. We also bring cultural histories and knowledge of advocacy, activism, resistance and organizing; we bring specific research methodologies born out of community scholarship; and we bring critical thinking and theoretical standpoints.
Research can be very extractive (it can take a lot without offering enough in return) and it’s important not to allow it to ‘extract’ your most intimate parts. I believe our stories are sacred; your words, your voice and your experiences are uniquely yours. Share them with intention and trust your body to let you know when you’re moving in the right direction.
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