Reflexivity is important to me in being a LE researcher. To be reflexive is to look at yourself, and (try to) hold yourself accountable for your biases, prejudice, privilege and social identity. As a nurse embedded within a psychiatric hierarchy, this is paramount. I may have LE and be a queer woman with mental distress and trauma, but I am also a registered nurse working in a clinical environment, and I benefit from the privilege I hold: I can (mostly) assert my voice and I am paid for the research that I do. If I do not strive towards introspection with clarity and humility – and all the discomfort that brings – my LE is meaningless, it does not bring me closer to my peers or to the research. This journey of reflexivity is not one that ends: I will never ‘get’ others’ subjectivities – that is impossible. I speak for myself, as a member of a community that is heterogeneous: I have one perspective, I am an ‘I’, but I want to strive to be ‘We’ (see Sweeney, 2016).
I feel increasing discomfort witnessing clinical researchers disclosing their own lived experience (LE). By doing this, researchers are able to position themselves as ‘getting it’, often without interrogating ethically dubious research methodology or dominant and problematised clinical theorisations of mental distress. For me, being a LE researcher extends far beyond having mental distress and so, it is not ethical to simply state a LE identity (see Russo, 2016). LE is an ideology: to possess it means to have experienced silencing, and to commit to working so that no one else feels that way, it means to work towards an awareness of preconceived assumptions about other people with LE and seek to challenge oneself. It is realising that I am allowed a voice, but it is limited. It is not about telling others what – or who – they are, it is not about viewing someone as broken nor is it assuming that because we share an experience, we know each other or what we need. Ultimately, for me, to say that I am a LE researcher is about social justice, it is to argue that people are not culpable for their pain but exist within complex sociocultural contexts that create and maintain their distress, through inequity, marginalisation and conflict.
In this blog, I will explore the implication of clinical researchers claiming a LE but without critically acknowledging it as embedded within psychiatric positionality. I will demonstrate this by presenting two experiences I have had as a participant and the negative impact they had.
Describe your trauma ‘event’
In one research project, I was asked – over the telephone and prior to consent – to describe my trauma ‘event’ by a researcher. It became apparent in this pre-screening assessment that they were adhering to a clinical questionnaire. Although I was told that I did not have to answer any question I did not want to, I garbled out the details of one of the worst events of my life. As many of us know, it is inadvisable to ask people to discuss the intimate details of trauma, for this risks (re-)traumatisation, and many survivors may be triggered into “flight, fight, freeze or appease”. I often appease, and this means being told I do not have to answer is fruitless because it is far easier for me to not ‘make a fuss’. I also felt confused – “would you like me to just describe the one event?” I asked – because I do not have ‘one’ trauma (and does anyone?) but a multitude, even if they did not cause conventionally recognised – and clinically diagnosable – traumatic stress. In describing one event, I was being forced to play into the psychiatric hierarchy of severity, where one experience is seemingly more painful than another. This researcher identified themselves as someone with a trauma history as a precursor to my participating, but if you have experienced trauma, surely you would know that to so baldly ask someone to disclose intimate details is likely to cause pain?
Tell us about your self-harm
In another research project, I honestly detailed my recent experiences of self-harm and suicidality, and my understanding that it was likely to happen again, in an online questionnaire. This felt empowering because after being told by psychiatry that all will be well once I take my medication (which has actually triggered suicidality for me), I was finally coming to accept myself as “unrecovered” (see ‘Recovery in the Bin’), as someone who was both strong and broken, both ‘ill’ and ‘well’, and neither. The next morning, I received an email in which I was informed that I was being flagged as a “risk”, and that someone at my university would be contacted, with or without my consent. When I informed the researcher of how dehumanising this was to receive, how terrible I felt that I had shared my vulnerabilities only to be ‘told on’, they mentioned that they themselves have LE and that they were constrained by ethics. In being constructed as a ‘clinical risk’, I am not a person anymore, just an object that might break at any moment. All researchers are somewhat constrained by ethics, but we have control over how we engage with others, what we say and how we make them feel: we have power either to create space where people with LE feel empowered, validated and safe or othered and restricted.
“I understand”
These examples tell two different but similar stories of privilege, indicating a lack of reflection on power in and across space, signalling that stating one’s LE does not necessarily empower peers. This is because, as mentioned, your subjectivity will be different from mine, and this is influenced by ideology, position in the psychiatric/social hierarchy, values, experiences and other identities. Thus, if you have LE and are, like me, embedded in a psychiatric institution, you do not exist beyond sociocultural norms of that sphere, you cannot escape the power differential apparent between the researcher and the researched, the clinician and the person with LE: you do not automatically share any commonality with peers with similar experiences nor do you have any right to assume this. Alternatively, if you do proclaim your LE as a researcher, you have a duty to reflect on how you occupy space across context, temporality and the variable identities you hold. If you do not, you risk harming your peers, colleagues, the people participating in your research and those whom your research most implicates: your LE becomes limited.
References
Russo. J. (2016) In dialogue with conventional narrative research in psychiatry and mental health. Philosophy, Psychiatry and Psychology 23(3-4).
Sweeney. S. (2016). Why Mad Studies Needs Survivor Research and Survivor Research Needs Mad Studies. Intersectionalities: A Global Journal of Social Work Analysis, Research, Policy and Practice 5(3).
Recovery in the Bin. https://recoveryinthebin.org/ Accessed 14.02.25.
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.