Becoming a lived experience advisor on gameChange was a turning point for Eva Roberts, rebuilding confidence and opening up a new career path.
Five years ago I moved to a new city to start afresh in my career. Things started off fairly well until I started to experience burnout and stress.
I wasn’t new to struggling with my mental health. Years earlier, I had been diagnosed with bipolar affective disorder and I experienced trauma as a child, which has had lasting effects on my mental health.
It took me a while to take my mental health seriously and in my new job, I was still working nightshifts and generally burning myself out. Eventually I had a breakdown and was no longer able to work. I lost my job, lost my accommodation and faced homelessness.
My mental health was at its lowest and along with experiencing a deep depression, I experienced symptoms of psychosis. It was an extremely difficult time and I became withdrawn and disengaged from society. I felt invisible and sadly, this was my life for almost three years.
Eventually I settled out of homelessness and my health started to improve. I still had residual symptoms like finding it a struggle to leave the house and experienced generalised anxiety. Despite this, things began to happen that positively affected the trajectory of my recovery.
Here was an opportunity to use my experience to help others during a research trial so I signed up, without any idea just how monumental this decision was to be.
I can’t remember how it happened but I found and applied for a lived experience role for people who had experienced psychosis with McPin . Here was an opportunity to use my experience to help others during a research trial so I signed up, without any idea just how monumental this decision was to be.
I was invited to be part of the Lived Experience Advisory Panel (LEAP) for a research trial of a new intervention for people who experienced psychosis and struggled to leave their homes. I was going to be able to help others like me, which made me excited and hopeful.
I remember the first LEAP meeting was held in Birmingham, which was a midway point for people travelling from all over the UK. The meeting was with other people who had lived experience, clinicians and the research team. Some of us met at the train station and someone from McPin lead us to the venue.
This was great for me because at that point I was hardly leaving my home so this meant I didn’t need to worry about finding my way to the venue.
Using my lived experience
The initial meeting was about introducing ourselves and hearing more about the gameChange project. Eventually, the LEAP met once every few months to develop the research and troubleshoot.
The experience became empowering for me because I was able to chip in and help shape the way the research trial was going to help others who had experienced psychosis.
The research team were very interested in what I had to say about my experiences and I began to see that my negative experiences were being built into ways to help others challenge their own anxieties. At the time, I really struggled to be in busy places with lots of people so I talked about what made me avoid places like GP surgeries and public transport.
It was transformative to go from feeling invisible to having my experiences related to by others in the room and provide a helpful resource for the research team. The process felt very therapeutic.
When the trial was ethically approved and ready to recruit participants, I seriously began to think about applying for a role as a peer support worker. I knew the project and believed in how it could help people experiencing psychosis.
Return to employment
I was encouraged by Thomas Kabir, the PPI lead at McPin, who supported me through the application process. I met the research assistant for the Bristol NHS research site and I asked her lots of questions about what the role would involve.
She encouraged me to apply so I did and got an interview. I felt a little reassured to see familiar faces on the interview panel but they didn’t make it easy!
During the interview I was extremely nervous and was unable to think straight. Not only had psychosis taken my confidence but my cognition was still affected at that time – I’d forget the questions and repeatedly asked the panel to repeat them. It felt like it went on for hours!
I just about managed to thank the panel before rushing onto the street where I began to I cry. I didn’t hear anything for over a week and so I was even more convinced that I hadn’t got the job.
My worry was unnecessary as I did get the job! The panel took a while to respond as they were trying to secure funding for myself and another person with lived experience who did really well in the interview. McPin sent words of support and celebratory cards.
It all felt so encouraging and I was excited to be at a point where I was employed again, something I didn’t think was possible for me after losing my last job years before.
I was going through my training for the gameChange peer support worker role when the pandemic hit, which meant that the trial – and my role – had to be paused for a while. Instead, I did a lot of the administrative tasks, eventually becoming the main administrator when the trial coordinator left.
Looking back, I was able to challenge my social anxiety by working part time with such an immensely supportive team. For the first time in a long time, I felt like I was contributing to society, I was earning money to be able to support myself and go out with the friends I had made in the new city. This all had a positive effect on my recovery.
Support is essential
Once the trial ended, I secured a role within the research department and now I help to bring research opportunities to others with neurodiversities and/or who struggle with mental illness. I really enjoy the work and often look back on my journey and feel surprised, but also proud.
I couldn’t have got here without the support I received. This is essential for those using their lived experience in roles such as being on a LEAP because of just how much of yourself you have to give. It’s so important to feel safe and supported when you are sharing your experiences.
I still struggle occasionally with my mental health but this time I’m met with understanding from my employer. I work part time to allow me to manage my health and various appointments I need to attend.
I know from meeting others that lived experience roles are not for everyone. Sometimes the place where this work takes place are in venues like hospitals that can be triggering.
Some lived experience roles have made others I know unwell and in turn lose confidence in themselves and the organisations drawing on their experience.
I feel lucky: for one, I felt safe enough to share the things I struggle with at work and two, I wasn’t heavily stigmatised as a result. But I know it’s a careful balance.
I had no idea when I signed up for the LEAP with McPin just how much my life and career would change. I gained back some of my confidence and self-esteem – although this is definitely still a work in progress!
Eva Roberts is a member of the gameChange Lived Experience Advisory Panel.