I am a lived experience researcher. What does this mean you may wonder? Surely everyone uses their lived experiences at work, we are all human. In my case, it refers to something specific – how I use my experiences of mental health as a qualitative researcher. I have experienced childhood trauma, addictions, a long-standing eating disorder, self-harm, panic attacks and bouts of severe depression, navigating various treatments and medication. As an adult, I was diagnosed autistic. This affects the way I express, react to, and interpret sensory, emotional, and social information. The diagnosis gave me a self-compassionate lens through which to re-evaluate the past. I began to question: ‘Is it I who am broken, or the systems I orbit?’.
My career path to research has not been straightforward. I did not make it to A levels, expelled for underperforming. I found my way to university as a mature student. The greater autonomy suited my learning style and I excelled academically gaining a First in Psychology. Then came job hunting. Interviews were my neurodivergent nightmare. Artificial social situations set up to test my competency, often using imagined scenarios. I failed often and ended up volunteering and interning much more. I was a teaching assistant, blogger, conference facilitator, election campaign assistant, but my CV looked like Swiss cheese which employers seemed to frown upon.
My lucky break came during a volunteer role at a local Mind charity. I earned a qualification to train local businesses about mental health and stigma using my lived experiences. The chief executive recognised my potential and continued to offer me work. I analysed evaluation surveys and gained skills that would hold me in good stead for a research role. My time with this charity gave me the courage to find the silver lining to my deep-rooted self-stigma. I started to blossom.
I was determined to continue working from a lived experience perspective, but opportunities were precarious, often on short term, minimum wage contracts. I gained NHS peer support work and at one time was juggling four part time jobs. My next lucky break came when a mental health research charity offered me a research role that matched my experiences well.
Hearing about how I use my mental health may be useful for people interested in this line of work. These are based on my personal views and experiences and do not talk for all lived experience researchers.
Being comfortable with my mental health has helped me to thrive at work. I learnt this through trial and error. This is not synonymous with the notion of recovery – overcoming struggling and moving forward. Living with chronic conditions, I have realised recovery is a dynamic, not linear concept. It is about having insight into all shades of my personal experiences and recognising the value they offer. The strength in my perceived vulnerabilities.
“The work can be emotionally challenging, especially when the research topic is close to home. Cultivating a resiliency to the uncomfortable feelings that arise can help but this does not, or should not, be done alone. Supportive work environments can help scaffold resilience. Of great personal benefit have been flexible hours, managers open to learning and access to wellbeing initiatives such as coaching. I encourage aspiring researchers to take these kinds of organisational factors into account.”
For me, there is less emphasis on explicit disclosure of mental health in the role. It is embedded in practice – perhaps turning up in the phrasing of recruitment documents, the emotional resonance felt during an interview, novel connections made between data points in analysis, or the creative and approachable ways work is shared with audiences. Reflexivity is important, especially when the line between you and the research is fine. Being able to question your own beliefs, assumptions and practices and untangle them from the subject can help transform the singular and visceral, into new knowledge. Knowledge more embedded in the wider contextual landscape.
“As a lived experience researcher, I really care. My overriding motivation is to represent the voice of the marginalised and fight for social justice, improving and changing mental health practices to better serve the needs of discriminated people like myself.”
I take on this essentialist and emancipatory approach, but not naively as I work alongside academics embedded in traditional institutions. Confidence in expressing my opinions that run counter to mainstream thinking is important but so is maintaining a pragmatic attitude. The role is about respectfully rebelling, not burning down a system.
Being a lived experience researcher has been healing. It has offered me the chance to critically explore my own multiple identities at work. This has felt a privilege as in many job roles your identity is fixed. It is also challenging as my identity can feel highly curated.
“My advice to aspiring lived experience researchers is: Go in with your eyes open. It can be emotionally charged. It can feel emancipatory. Be honest with yourself and ask: ‘How much can I afford to give without burning out?’ The influence you have is real but may not feel enough. However, the more voices that join the field the more power there is to disrupt and impact mental health research for the greater good.”
If you would like to get in touch with this case study researcher please email: wiredbetter@gmail.com. They have chosen to maintain anonymity online as the environment has the potential to discriminate and shame.