A lived experience perspective on being a mental health researcher

I do not ascribe to the concept of a mental health condition, illness or disorder. Instead, I have always found resonance with the term ‘mental distress’, or ‘eating distress’. For me, this term more effectively encapsulates the broad scope of living with mental health difficulties.

Credit: Caroline da Cunha Lewin

Mental distress has never felt static or confined to a single diagnosis. It has felt variably flowing, depending on the adverse social and relational experiences I have had. Often, such distress seems like a direct retelling, replication or reflection of traumatic experiences.

Thinking of my mental distress in this way contextualizes it as an understandable, proportionate reaction to difficult experiences, which has reduced any self-blame derived from thinking of my mental distress as being entirely my fault or my deficiency.

Any diagnosis I have received has somewhat described me (or realistically, my ‘symptoms’), while simultaneously completely failing to do so. A diagnosis creates an identifiable label for my distress, but it fails to consider the difficulties I have been through. What I learn from this label is that I am not normal (and somehow deficient) because a diagnosis places me against ‘other’ people who are ‘normal’ for not having my experiences nor my responses to them.

This simplistic compartmentalization of mental distress has been apparent throughout my contact with mental health services. Good (and some less good) healthcare professionals with the best intentions have wanted me to get better. However, I increasingly realize that they are subject to the constraints of a system that sees individuals as problems to be fixed, not whole people whose distress proportionately reflects their psychosocial circumstances.

I started my career as a general nurse working in primary care in a prison, and then briefly on a psychiatric unit working with people with eating distress. I became disillusioned with and highly distressed by how institutions — and often the people who work in them — are embroiled in a sense that mental ‘illness’ speaks of individual deficiency, and that this deficiency is to be controlled or suppressed. It was as though people with mental distress were an inconvenience, and their pain was something they had brought upon themselves and could choose to leave behind — or let in. This was especially true if they did not get better according to psychiatric notions of clinical recovery.

I had experienced mental distress and self-harm since mid-adolescence. This institutional understanding of mental distress went against my personal understanding of myself, my values and my perspective. There was a fragmentation between how I felt my distress had always been related to social experiences and my desire to be a good patient, to be ‘better’, to be ‘fixed’ and supposedly to be like everyone else.

Increasingly identifying as a lived experience researcher and conducting research closer to the reality of what it means to live with mental distress was a relief. I had finally found my own, authentic way of expressing my experiences. I had found my voice and was able to — and allowed to — assert it. Instead of feeling silenced or minimized, I can use my pain to create something good, which helps me, but most importantly, could hopefully help other people.

“Instead of feeling silenced or minimized, I can use my pain to create something good, which helps me, but most importantly, could hopefully help other people”

I am continually reflecting on the experiences I have had with mental distress, service access and treatment, and personally difficult experiences. I use these reflections to inform research priorities and objectives, and to interpret data.

I always critically seek to consider how my experiences do (or do not) resonate with other people, so they are contextualized in the wider sociocultural experience. I feel using my lived experience in this way provides a humanistic lens through which I can analyse my research. It also means that the people most implicated in this research — the people with mental distress — are centralized. To me, this approach to research feels vastly different to mainstream positivist research, which often valorizes the clinician and puts them above the person with mental distress, who might be seen as an unreliable narrator of their life.

However, simply having a lived-experience researcher identity is not sufficient. People with lived experience — especially in privileged positions such as my own as an academic and a nurse — can also perpetuate harm.

I always try my best to be self-aware and critically reflective on my own biases, privileges, ideology and feelings about my work, about others, and the part I have played, and still play, in the psychiatric system. I also always want to include others in my research, for example, through patient and public involvement.

I have learned so much from being part of the patient and public involvement group linked to my doctorate, and my research feels so much better than it was when it started because of my peers’ expertise and insights. More importantly than what I get out of it, though, I want my patient and public involvement peers to feel like they have space for their voices, that they can always safely critique me, tell me what I am getting wrong and how I can improve so they can feel safe, valued, heard and seen.

All researchers need to be self-reflective and self-aware of how their positionality, agenda, knowledge and own biases take up space and risk the silencing and retraumatization of people with mental distress. For people with mental distress to feel safer, academics might need to feel uncomfortable or even unsafe as our perspectives and the ways we treat people with mental distress are questioned and critiqued.

I often see researchers and clinicians who are unwilling to learn from people with lived experience and are defensive about themselves, their profession, their perspective and the systems they work in. I also see a huge amount of normalized ableism within academic and clinical spaces against people with mental distress. I see this ableism happening explicitly in the dismissal of people’s perspectives, and implicitly through how clinical and academic language individualizes, problematizes and denies people’s distress and experiences.

Academics and healthcare professionals need to be prepared to sit back, listen and hear how people with lived experience see themselves, their experiences and their contact with healthcare services.

The emotional labour of working as a lived experience researcher can be tiring. I feel passionate about my work contributing to social change and hopefully positively impacting people who experience mental distress by helping them to feel more heard and seen, but it can feel like a lot to carry. There are often barriers to this work; for instance, other people and institutions might not accept survivor perspectives, question their credibility, deny their legitimacy, be defensive and combative or normalize ableism. All of this can silence people who have probably already been silenced.

I often feel this silencing at clinical conferences. It is common for organizations to say what they are ‘doing well’ or that they are ‘the good guys’, completely blocking the possibility of anyone else questioning them, saying ‘actually, you have made significant mistakes and harmed people’. I find myself feeling silenced and misunderstood when this has happened (and it can happen a lot).

Compassionate, thoughtful and kind supervision is essential to mitigate this harm, and peer support with colleagues with lived experience is a must. I am lucky to have a space to reflect openly with my doctoral supervisors who always encourage me to be self-caring. I also work closely with lived experience researchers with whom I can reflect and authentically voice my concerns. However, it is of most significance that organizations and the people who work within them look to themselves, to be humble, self-critical and ensure they consider how they can improve.