From Exclusion to Inclusion
For many years, I didn’t feel included in conversations about mental health, especially when it came to research or treatment development. Decisions were made about people like me, but rarely with us. I’ve lived with the effects of trauma and understand deeply how it feels to be left out of systems that are supposed to help. Living with PTSD is like having an invisible heavy veil around you at all times, one that no one sees but that weighs you down and clouds hope. So, when I was invited to contribute as a patient representative to the GALENOS project, it wasn’t just another meeting; it was a moment of recognition.
What is GALENOS?
GALENOS is an international collaboration of researchers, clinicians, and lived experience experts working together to make sense of the scientific literature on anxiety, depression, and psychosis. The project’s goal is to create living systematic reviews, free, regularly updated summaries of the best available evidence, to guide future research and funding. I joined during a prioritisation phase of a review on exercise as a potential treatment for post-traumatic stress disorder (PTSD).
Diverse Voices, Shared Purpose
From the moment I joined, I was struck by the diversity of the group. We came from different countries, cultures, disciplines, and life experiences, but shared a common goal: to make mental health research more relevant, accessible, and humane. We looked at evidence from both human and animal studies to understand how exercise might improve PTSD symptoms. While current treatments like CBT and EMDR work for some, they’re not effective for everyone. Exercise offers a promising, non-pharmacological option, but more evidence is needed to understand how, why, and for whom it works.
Being Heard and Valued
We weren’t just there to observe. We were asked meaningful questions about the direction of the research:
- How do cultural beliefs and life circumstances affect someone’s relationship to exercise?
- Should PTSD be approached more as a spectrum of symptoms than a single diagnosis?
- How do age, type of trauma, or physical ability impact recovery and treatment needs?
These discussions felt honest, thoughtful, and refreshingly human. For once, I wasn’t on the outside looking in. I was at the table, offering insight that only lived experience can bring.
Why Inclusion Matters
Being part of GALENOS didn’t undo the years I spent feeling invisible to mental health services and research. But it mattered. It reminded me that inclusion is powerful, not just personally, but practically. Research that involves people with lived experience from the start is more likely to ask the right questions, spot the real gaps, and lead to treatments that work in real lives.
GALENOS gave me a chance to be heard. I hope this kind of collaboration becomes the rule, not the exception.
