13th June 2024 Blog

'Just' a lived experience practitioner: awakening the force of mental health experiences

Lived experience • Racial equity •

Lived experience practitioner and Star Wars fan Chris Frederick shares his journey to getting involved in mental health research, the importance of minority ethnic voices in creating change, and how to manage burnout.

Chris Frederick

When I tell people I am a Lived Experience Practitioner (LXP), I often get a mix of puzzled looks and curious questions. “What exactly does that mean?” they ask.

My response, typically accompanied by a knowing smile, is that it is a role where personal mental health experiences inform and enhance professional practice. But there is so much more to it than that.

The journey begins

My journey to becoming an LXP started quite recently with the birth of Project Soul Stride in August 2023.

Throughout my last three years of focused recovery I learned a lot, not just about my own mental health struggles but also about the broader world of mental health and suicidality.

I also recognized a lack of minority ethnic voices and participation in events and webinars on these subjects, which often made me feel alienated and alone. So, it was time to use my voice and vast commercial skills in business communications to help bring about change.

Some people, including my therapist at the time, thought it might be too soon to tackle such work while going through my own traumas. But I sought spiritual guidance and realised that there can be no real end to mental illness; it is something that can stay with you forever. So why not start the journey and see where it might take me?

I am pleased to say that since I started my LXP journey, I have been involved in 21 separate projects of varying sizes and complexity, including two with the McPin Foundation.

One of these was particularly interesting, focusing on the use of the Limbic AI tool for the Mind Supported Self-Help Evaluation.


Image: Emmanuel Denier on Unsplash

Therapy is a must

Reflecting over the last 10 months, it has been a huge learning opportunity and provided a lot of personal development. However, it has not been straightforward, so ongoing therapy has become an essential ingredient.

At times I have forgotten about my mental wellbeing and been in danger of burnout, often triggered by the demand on my time.

Being so busy can sound exciting, particularly when you suffer from chronic loneliness and social isolation. I was clear in my mind about what I wanted to achieve: trying to level the playing field when it comes to hearing from Black voices in important conversations around services. By ‘Paying It Forward,’ I could at least try to be courageous and share my views and opinions.

These days I am a lot more selective in the work I take on, splitting my efforts evenly between short-, medium-, and long-term projects.

I still receive calls asking for participation, but I have had to set some boundaries to save time for wellbeing activities.

Just recently, I collaborated with a Black therapist for the first time, which has been a real gamechanger. This experience has been both eye-opening and affirming, with the cultural resonance and shared understanding.

Alongside this, other inner work, and walking in my local cemetery 3-4 times per week has all helped a lot with clearing the fog.

With the lack of minority ethnic voices involved in critical research, we are in danger of unconscious biases leading to the repetition of existing research.

Using lived experience for change

As an LXP, my role involves more than just sharing my story. It is about using my lived experiences to inform research, shape policies, and improve mental health services.

One of my key engagements is with Project Soul Stride, where I serve as the Principal Investigator. This project aims to address mental health issues within the Black community in London, focusing on creating culturally competent support systems.

Another aspect of my work involves Patient and Public Involvement (PPI) engagements. These are crucial in ensuring that the voices of those with lived experiences are heard and valued in the development of mental health services.

My involvement in various committees and advisory roles has given me a platform to advocate for more inclusive and effective mental health practices. However, with the lack of minority ethnic voices involved in critical research, we are in danger of unconscious biases leading to the repetition of existing research.

These personal experiences have highlighted a significant knowledge gap between service providers and end users. Many times, service users feel misunderstood or disconnected from the professionals supposed to help them. This disconnect can be a barrier to effective treatment and recovery.

By sharing my journey, I hope to contribute to bridging this divide, fostering greater trust and awareness of the services available.

Image: Leo Visions on Unsplash

Humour during mental health recovery

Despite the serious nature of my work, I believe in the power of humour to heal and connect. In fact, when I started this work in 2023, the term E.B.E. (Expert By Experience) was mentioned. Being a huge X-Files fan, I immediately responded, “What, an Extra-Terrestrial Biological Entity?”

Several months later, I sometimes feel alienated and misunderstood, much like an E.B.E.

One of my favourite aspects of being an LXP is sharing lighter moments and anecdotes that resonate with people on a personal level.

For instance, during one of my talks, I joked about the universal experience of awkward silences in therapy sessions, which had everyone nodding and laughing in agreement.

Humour has a way of breaking down barriers and making difficult conversations more approachable. It reminds us that while the journey of mental health recovery is serious, it does not have to be devoid of joy and light-heartedness.

Embracing this balance has been a crucial part of my own recovery and my practice as an LXP.

For anyone reading this who might be considering a similar path, I encourage you to embrace your story and use it as a force for change.

Advocating for better mental health services

As I continue my journey, my goal remains to advocate for more inclusive and effective mental health services. By sharing my experiences, I hope to shed light on the challenges faced by those with lived experiences and promote a deeper understanding among service providers.

For anyone reading this who might be considering a similar path, I encourage you to embrace your story and use it as a force for change. Whether it is through writing, speaking, or engaging in community projects, your lived experience is a powerful tool that can inspire and inform.

In conclusion, being “just an LXP” is anything but simple.

It is a role that demands vulnerability, empathy, and a relentless commitment to advocacy. But it is also incredibly rewarding, providing opportunities to make a real difference in the lives of others.

And sometimes, it is about finding those moments of humour and light during serious work, because after all, healing is not just about overcoming darkness but also about embracing the light.

Image: Tommy Van Kessel on Unsplash

Getting involved in research

I am sometimes asked ‘how do I get involved?’, and then I automatically switch back to my commercial private sector business development hat.

“Well, it’s not rocket science actually.” I simply mapped all the mental health organisations up and down the country and signed up to their newsletters.

Suddenly, my inbox was full of junk, so I quickly sifted through and figured out which ones, like the McPin newsletter, included opportunities for LXPs.

I started small with a simple engagement, then asked for a quick written reference. As my confidence grew, I started to seek out more meaningful projects like The Friendship Bench in London.

Then I wrote a carefully crafted ‘expression of interest’ email with my professional bio and any supporting information, such as references or articles I had written.

Slowly, I began to get some positive responses, and now I am in demand. The danger is the demands on your time continue to grow, so be sure in your own mind what it is you are trying to achieve, whether it is advocacy or citizen science, for example.

For more insights and resources on mental health, feel free to explore the following links:

In 2018, Chris confronted a profound mental health crisis, a defining moment that catalysed his remarkable evolution. With unwavering resilience and determination, he embarked on a path of ‘self-recovery’, transforming his personal struggles into a driving force for positive change. You can read more of his writing on Medium and follow Project Soul Stride on X.