I’ve dedicated the majority of my life to lived experience work with the goal of bettering the wider world and myself. In the ongoing context of ableist society and gatekept academic institutions, I wouldn’t have had the career and small acclaim I’ve had without lived experience work. I know that it’s made me a better human being and that I’ve felt empowered and valued through my contributions. When I’ve felt as though there is nothing and I am nothing, I’ve been made to feel otherwise in my work.
Yet, lived experience work has its limitations. Despite the increasing involvement of lived experience voices across different sectors, it has its limits where I need it most. In systems that are meant to help us.
I’ve been fortunate that my lived experience work has been recognised for its importance. Over a decade ago I started out as a mental health campaigner, going onto become an ‘expert by experience’ in different research projects. Some of those were small pieces of work: one-off tasks that might’ve been a bit tokenistic in retrospect. But bigger things started happening when I became a member of longer projects; sharing status with researchers and being a published co-author. Without it I would’ve been lost, particularly as someone jobless and chronically ill in the COVID-19 pandemic. In years of turbulence, lived experience work has provided me with both stability and flexibility. It has given me confidence that I have things to offer the world that other people might not be able to.
I’ve written before about the failures of mental healthcare to view me as a person with my own rights and needs. I see it as inevitable that I would be dismissed in mental health or psychiatric care services and feel forced to survive on the outside; on my own or in community-led spaces. Where it has become more difficult or impossible to exist outside healthcare services is in care for my physical health, inseparable from my mental wellbeing.
As someone with multiple chronic illnesses, life is difficult. The difficulty isn’t just the symptoms and longevity of it, but being gatekept from care and the endless never-ending medical admin. I’ve been sick for years and only now do I think I might get some support, if I say the right things or fall into the right categories. I am always dismissed for the way I am. My experience is shunned by that of clinicians and their assumed views of me. Referrals made on my behalf paint me as hysterical and incorrectly portray my symptoms. For decisions surrounding my own future, somehow my own voice is inadequate and unqualified. I run in circles, from service to service, desperately trying to survive.
It’s easy to think that the denial of lived experience is less apparent in physical than mental healthcare, but the erasure runs deep. While the stigma and ableism is different and historical, we are all suffering at the fate of being ignored. While some can be denied physical healthcare for their lived experience, we can be sectioned and have our rights stripped away for living our experience ‘too much’. It’s easy to start to think that you are the problem within this cycle. I’m not alone in internalising this belief through repeated medical trauma. It’s everywhere. I also lead lived experience work outside of the mental health sector in the physical healthcare space. People who have seen their physical needs neglected come to us to raise awareness, to try to change things so that their outcomes don’t happen to others. Their symptoms are often dismissed and ignored, medical professionals seeing their own insight as more important than an ‘overly-anxious’ patient. The impact of this denial can result in acute disease progression, even resulting in death, dismissed as conditions being too rare or unknown.
Lived experience involvement is seen as an increasingly essential part of research within multiple sectors. Yet too often it must be given when it is asked for and only with certain strings attached. It’s an asset in academic spaces but a frustration to clinicians. Depending on context, I am utilised or gaslighted for my experience. My self feels fragmented and I am walking a tightrope between my knowledge of my existence and what other people want to say about it. In healthcare settings I don’t even touch topics like neurodiversity and gender. Intersectionality is lost and oppression is rife.
I am proud of the work I have done and get to do. I fully believe in the power of lived experience work and it can be done so well. But when it reaches its limits in research papers or at the door of the one or two professionals who will listen, it won’t go far enough. I advocate for this work yet I continue to be gaslit or gatekept from my care, never able to say what my body or mind needs. My aims to change the world for the better will linger, but I am scared to perpetually suffer and eventually die due to my own voice being erased while the lived experience voice continues to be demanded.
There are people out there that will listen and value us. There are people that are excellent at empowering lived experience voices in physical and mental healthcare, in research and clinical practice. There are those of us that exist on both sides that will keep calling out the dichotomies. There are some medical professionals that I have met that inspire me to continue to exist, hoping to one day live instead of just survive. We must continue to use our lived experience to rewrite the narrative of those that try to erase us.
The Limitations of Lived Experience
This blog is part of our “The Limitations of Lived Experience” series which was open for submissions from NSUN members in January 2025 and published from February 2025. All the blogs in the series are available here.