I became involved with lived experience work when I was sixteen, because I was angry at the experiences I’d had whilst sectioned on a CAMHS unit, and angry at the system for not recognising or understanding my undiagnosed autism and ADHD. I imagined that after eight years of lived experience work, my desire to fight for change might begin to diminish, but I remain just as determined. However, there are other feelings of growing intensity present now too, which make continuing this work feel less of a choice and more of an obligation.
My wish to share my experience and demand change remains, but I also feel a sense of grief, frustration and confusion. Grief, for the years stolen from me not only by mental illness, but also by the mental toll it takes to repeatedly go over my experiences when engaging in lived experience work. Frustration, at the way lived experience involvement is so often a tokenistic gesture or a tick-box exercise. And confusion, at whether lived experience work is something I truly want to do or something I feel compelled to do, regardless of its consequences.
On an intellectual level, I know that it is a choice. I get up in the morning and decide what to share on social media. I decide which organisations to work with. I decide what kind of work I say yes to. But, on a deeper level, it doesn’t feel like a choice. My empathy towards other people and my yearning for justice means that the idea of others experiencing poor care weighs heavily on me. When there is the slightest opportunity that I could influence a change, no matter how small it may be, I feel compelled to take it. Almost as though because I can, I have a duty to. After all, I survived, when many do not. Survivor’s guilt eats away at me, and I don’t want to waste the opportunities I am given.
I am beginning to learn that I don’t actually owe anybody my story. Just because I have the ability to do this work on a practical level doesn’t mean that personally or emotionally the effects aren’t significant. Lived experience work can be re-traumatising. Repeatedly thinking about and even sharing the worst experiences of your life is an incredibly vulnerable position to put yourself in. And most of the time you are left wondering if any real change will even take place. Yet, time and time again, I continue to put myself in these positions because I desperately hope that something might change.
More and more, I am questioning the root of my desire to do this work. I know that it stems from my traumatic experiences within the system, and I wonder whether that means it is truly me that wishes to pursue it, or the effects of trauma. I want to take back the power stolen from me by the system and regain some control over my story. Perhaps, for the past eight years, lived experience work has been my way of doing this. But I am starting to wonder — how far does what happened to me in the past define my life going forwards? Am I continuing to allow mental health services to hold power over me by engaging in co-production? Does this mean the lingering effects of mental illness are still dominating my life? And what would my life look like if I invested my time and energy elsewhere and stopped allowing the trauma that I experienced within the mental health system to shape what I choose to do with my life?
The internal battle created by these conflicting feelings and questions is a difficult one to wrestle with. There is the constant pull to do more, to fight for change, to try to make a difference, alongside a growing sense that the work itself is keeping me trapped. There is very little I can do, aside from carefully considering each lived experience opportunity and assessing whether it is something I truly want to do or something I feel I should do. Additionally, I can remind myself that I don’t owe anyone my lived experience. I hope that others wrestling with the same doubts can recognise this too.
Lived experience work, when done well, has its place within services. But we need to recognise the conflict individuals might feel about participating in such work. We deserve to be properly compensated for our time and energy. We have the right to speak up when things start to feel tokenistic or uncomfortable. And we always have the right to walk away, when the work no longer feels right for us.