Critical Reflections On Being A Researcher Service User by Dina Poursanidou
My name is Dina Poursanidou and I will be speaking as someone who is both an academic (trained) researcher and uses mental health services. I started my research career back in 1994 and I have been using mental health services in Manchester since the summer of 2008.
I had my first major mental health crisis, an episode of ‘clinical depression and anxiety’ according to the official diagnosis, in 1991 when I was studying for a Master’s degree in Nottingham University. Following this mental health crisis, I embarked on a long journey of self-discovery and healing which comprised having intensive psychoanalytic psychotherapy and completing a PhD on the experience of depression in young people as its vital components.
My second major mental health crisis, this time a prolonged episode of ‘treatment-resistant psychotic depression’ according to the official diagnosis, occurred between July 2008 and April 2010, resulting in a 3-month long detention under a section in an acute psychiatric ward in Manchester in 2009, as well as a 2-year period of unemployment. Following this very serious and enduring mental health crisis, I returned to my research post at the University of Central Lancashire (where I had worked as a Research Fellow until the summer of 2008) and started working on the Independent Mental Health Advocacy (IMHA) project as a Service User Research Fellow in the summer of 2010.
My mental health crisis back in 2008-2010 and in particular my hospitalisation and sectioning in 2009 represent major biographical disruptions for me that entailed huge losses, traumas and suffering, having catastrophic consequences for every aspect of my life, which left me feeling a great deal of bitterness and anger, as well as deep sadness and an acute sense of loss. First and foremost, as a result of my very severe and persistent depression, for a couple of years, I lost what had always been a vital source of self-esteem and recognition for me-my capacity to think creatively and excel intellectually/academically.
I could not think clearly, I could not concentrate and retain information, I could not process language, I could not read and understand what I was reading, I could not be intellectually creative. My head was constantly heavy and cloudy due to the potent medication I was prescribed- especially when I was on copious amounts of it. I was off work for nearly 2 years and thus away from opportunities for intellectual stimulation for far too long. When I was detained in hospital, I was treated as somebody with diminished capacity and insight.
Characteristically, my care records covering the period of my detention in hospital (January-April 2009) portray me -among others- as ‘dishevelled, retarded, highly agitated and characterised by suicidal ideation, lethargic and far from mentally alert, incontinent, occasionally subjected to physical restraint and possibly needing ECT treatment due to treatment-resistant severe psychotic depression’.
I guess all the above represented a huge blow to my confidence and a source of profound feelings of humiliation and shame, as well as a source of a deep sense of failure, unfairness/injustice and stigmatisation- all acutely disempowering emotions. In a nutshell, my mental health crisis back in 2008-2010 and in particular my sectioning in 2009 were scarring, terrifying experiences whereby the very core of my existence was deeply shaken and all my certainties collapsed; therefore, the struggle to regain my confidence and repair my life, a struggle that began slowly in the spring of 2010 and is still continuing, has been hugely challenging.
At the same time, I recognise that my latest mental health crisis and in particular my journey of recovery (including foremost my experience of therapy with an NHS clinical psychologist, my participation in a mental health arts project, and my return to work) opened up opportunities for personal growth and transformation for me, affording me hope and new insights into the human condition. Hence, my feelings about and evaluations of my journey through madness and back are characterised by profound ambivalence. If madness is ‘a dangerous gift’ that users of psychiatric services need to embrace, as Mad Pride advocates, I am yet to embrace my own madness.
Not long ago I came across an article from the Guardian dated August 2009 and entitled ‘For some academic researchers, mental illness can be an advantage’; the article discusses how ‘users of mental health services are increasingly being recruited as academic researchers’. Reflecting on the mental illness as an advantage paradox (or what can be perceived as a paradox especially by someone who has lost a lot through mental illness), I thought that in fact there are probably not that many jobs for which a past diagnosis of ‘psychotic depression’, psychiatric hospitalisation and detention under a section, as well as current use of secondary mental health services are requirements and assets rather than serious drawbacks. But when I worked on the IMHA project as a Service User Research Fellow, I had one of those jobs. I was specifically appointed to my research position mainly because of my experience of detention under a section and my use of secondary mental health services, as well as my academic credentials.
Does it pay to have had ‘psychotic depression’ then?
Suddenly, when I re-entered academia in the summer of 2010, I was employable having been unemployed for 2 years. I was once again able to operate in an academic and research environment and benefit from the available opportunities for intellectual stimulation. In my Service User Research Fellow post, I was able to feel worthy and value myself again, I saw my confidence in my academic abilities slowly develop in spite of my battles with low self-esteem, performance anxiety and self-doubt; and these experiences were really affirming, validating and empowering. I felt able to put a particularly traumatic experience (my sectioning in 2009) into some positive use, hoping to make a difference in the lives of those who experience compulsion within mental health services. I went from being treated as somebody with diminished capacity and insight (whilst in hospital) to being celebrated as somebody who has acquired ‘unique insights’, valuable service user/survivor knowledge (experiential, embodied, tacit knowledge stemming from the direct, subjective, lived experience of mental distress) and ‘expertise by experience’.
But does it really pay to have had ‘psychotic depression’ when survivor knowledge, mad knowledge is difficult, unsettling and troublesome knowledge? How can one bear the contact with the inchoate (madness) and the discomfort and terror it generates? How can one tolerate the collapse of rationality and the uncertainty of not knowing?
I used my service user subjectivity and emotional experience as an instrument of knowing and understanding when – in the context of my Service User Research Fellow post-I interviewed users of mental health services about their experiences of IMHA advocacy whilst in compulsory treatment. But the traumatic stories the interviewees told me brought back memories of my own personal traumas and I often struggled in my efforts to achieve a balance between showing empathy and maintaining my emotional boundaries.
Monica, one of the interviewees, told me how when she was put on a 5 ’emergency’ Section whilst already a voluntary patient, she was given a lot of paperwork but nevertheless she could not really understand what was happening to her as she had not been sectioned before and she was not offered the chance to speak to anybody properly about the sectioning. She said that she only understood that she could not do anything about the sectioning and that she could not leave the hospital. Monica’s tone of voice whilst telling me all that spoke of the profound feelings of confusion, despair, helplessness, powerlessness and entrapment she must have experienced at the time of her sectioning. I felt I could identify strongly with such feelings-when I was detained for 3 months back in 2009 I was given no paperwork and no explanation whatsoever about the meaning and implications of Sections 2 and 3 I was put on; I guess I finally understood that I could not leave the hospital without Section 17 leave only after I escaped twice and was brought back in police custody (i.e. at the back of a police van).
Monica also talked about one’s feeling lost, disorientated and confused when one is first admitted on a psychiatric ward-even when one is admitted as a voluntary patient. In my mental health/care records I read that I spent a great deal of time when I was detained in hospital back in 2009 being ‘highly agitated’, which could have been partly the result of precisely feeling lost, disorientated and confused on the psychiatric ward I was sent to-a foreign environment for me at the time.
Furthermore, Monica told me about her serious, persistent and at times life threatening self-harming. I found it particularly difficult to hear about how when she was sectioned in 2010, she self-harmed so severely through bloodletting that she had to be given blood transfusions in a General Hospital. Monica’s self-harming made me think about the ways I had used to self-harm when I was acutely unwell. Although I had never cut myself with a blade to blood let, I had hurt my scalp very badly by pulling hair and scratching, scratched and wounded my face, bit my nails viciously, and overeaten eating inappropriate foods that had aggravated my Crohn’s disease and induced severe flare ups.
‘Madness as a dangerous gift’ – the lived experience of mental distress and mental health service use , as well as the knowledge stemming from that, may be an asset, something potentially positive and valuable in the context of mental health research, but at the same time represents something excruciatingly painful that at times I wish I did not have!
(From The Icarus Project website)
You can read more written by Dina at her blog: