Anyone working in or accessing mental health services will be aware of the immense amount of notes one single person can collect during their time as an NHS mental health patient. Sometimes it feels as if the only thing services do is keep notes: seemingly, for many of us, in lieu of actual care. Risk assessments, clinical assessments, MHA assessments, MCA assessments, care plans, crisis plans, MDT notes, session notes, appointment notes, ward notes, observation notes, admission notes, discharge notes, liaison notes, crisis notes, diagnostic formulations, team formulations, emails and letters between staff, letters to outside services, letters from outside services… so many words, all pinging around between people who may have never even met the person they describe; all filled with the thoughts, opinions, and judgements of seemingly everyone in the world but the individual they are about. A person could be crushed to death under the weight of their notes but still not have received any sort of meaningful care. After a while, it feels as if you actually cease to exist, swamped by this paper version of yourself which somehow takes on its own life. After a while, it is your “paper-self” who is risk assessed, diagnosed, and treated. After a while, you realise there’s nothing you can do to stop the rise of your paper-self, because every word, every action, every movement you make only adds to its ever-growing and everlasting presence.
I made the decision last year to request all my notes from my time under services. About 8 years’ worth of words written about me. It made for extremely grim and disturbing reading. It wasn’t like reading a bad story about myself. It was as if I was reading about a stranger who happened to have had some of my experiences. This paper-based stranger sounded awful. She was angry, aggressive, difficult to talk to, unreasonable, challenging, exhausting... She was more of a paper-based nightmare. Reading about her, I had this image of papers blowing chaotically through my psychiatrist’s office, while staff desperately ran around trying to grab them and stuff them into files. This detachment from my paper-self, however, wasn’t enough to quell the devastation I felt at what was written – I was completely aware that while services had succeeded in sculpting a new person made entirely of paper and ink, they ultimately believed that person to be me.
I was diagnosed as autistic in my mid-twenties, and as part of the process I was required to gather up anything and everything written about me as a child and teenager. I dug up school reports, marked assignments, doctors letters, my entire paediatric medical history etc. I also found things from my early adulthood – job references, letters of recommendation, university commendations etc. Here was another paper-self, except this time, the person I was reading about was the exact opposite. This paper-person was kind, soft-spoken, honest, trustworthy, and personable. This person seemed to be easy to get along with, reasonable, and calm. I struggled to hold the two paper-selves in my head together. How could they be so drastically different from one another? How could I be so drastically different. Two “versions” of me - one which mental health services see, one which all these other people see... Which is true? Who am I? How can two such opposing figures be one and the same? How can two groups of people take away such different impressions of the same person?
After reading and re-reading my notes, the only thing I could come up with which fitted was that one of these groups of people was looking for bad things. One of these groups consciously sought negative interpretations of any and all words and actions emerging from me. One of these groups was, in fact, not just looking, but expecting this. It seems, as my paper-self has grown, so has the vitriol, rolling over and over like a snowball from every prior encounter. What starts as a note stating I cried in an appointment, becomes a letter that details a “difficult appointment”, which takes flight as a descriptor of me as a “difficult person”, which ultimately leads to a doctor I only just met describing me as “difficult – as expected”…
What you can see there is confirmation bias: the seeking, interpreting, and recalling of information in such a manner that it confirms a prior held belief. Before meeting me-the-person, that doctor met me-the-paper-nightmare, and despite having a perfectly ordinary interaction with me, interpreted my words and actions in such a way that they confirmed his prior understanding that I would be “difficult”. This is the curse of the paper-self. Despite literally being a pile of paper, she holds more authority than me on my own life, because she is sculpted with the thoughts and words of “professionals”… and in the end, they are the only thoughts and words which matter.
I am me. I have lived my life from the very beginning, every single moment. I have created every laugh I have laughed, every tear I have cried, every word I have spoken. I have thought every thought which has entered my mind. I am the only person in the whole world who has been present within myself for every single second of my existence; I know every dark corner I have hidden in; every secret I keep locked away. Ultimately, I am the only thing I can truly claim mastery of. I am… but this isn’t enough, because I am not them.
It seems to me though, that despite this immeasurable, self-proclaimed authority over other people’s minds, mental health clinicians rarely seem to be capable of looking past the great barrage balloon of pomposity and grandeur they carry with them on little strings, to really see their patients. My paper-self is this strange combination of shallowness and depth. Clinicians have looked deeply to discover facets of my being not many people see. They have looked for hidden meanings in my words and behaviour. They have delved into my past, my present, and my internal life, and then, mystifyingly, interpreted their findings in the most shallow, vacuous way possible... I have trauma which appears to have repeated itself, I must have sought it and enjoyed it. I have said and done things which have brought up difficult feelings for the clinician, I must have done it on purpose to provoke those feelings. I have experienced and expressed frustration with a clinician, this must be how I act at all times, with all people. My clinical presentation has caused concern in clinicians, making them feel the need to act, I must have been manipulating them. I have felt distrust towards a clinician making decisions about my life without me, I must not trust anyone. It’s like a complete theory of mind failure. Bobbing alongside the balloon then comes the matter of self-reflection, or lack thereof, by both individual clinicians, and services on a wider scale. I have never had a face-to-face encounter with an NHS mental health worker willing to acknowledge the colossal problems inherent within services, or willing to acknowledge that they themselves can, often inadvertently, deeply traumatise those who they care for. If someone feels that everything they do comes from a place of compassion, understanding, the desire to help, and is meant with good intentions, it naturally follows that expressions of frustration or upset directed at them must be unreasonable, or even pathological… It couldn’t possibly be that mental health patients have reasonable, sane grievances. That would be madness.
Basically, you end up in a situation where you have a stack of terrible clinical notes (due to the above reasons, and more) and these notes then become the patient, simply because they have been created in their entirety by people perceived to provide a more a trustworthy representation of the patient than the patient themselves. The irony of my mental health paper-self being so God awful is, as I have written about previously, as a mental health patient I make a huge effort to be what services want me to be, because I am so deathly afraid of the consequences of pissing them off. I am not a perfect person, far from it, I have lots of flaws; I can be stubborn, single-minded, impatient, irritable. I prefer to be left alone, struggle to give the people in my life enough attention, and can become so focused on whatever project I have going that I forget the rest of the world even exists. But, hilariously, or perhaps not, none of these words or descriptions can be found daubed on my paper-self. My paper-self is not a walking embodiment of my personality flaws. My paper-self is, in fact, a fantasy, a figment of some collective staff imagination, a list of their own failures to make any attempt at understanding me. While it is incredibly distressing to read their lazy interpretations of my words and actions, knowing that once written, I cannot get them unwritten, I can at least hold on to the knowledge that they are wrong. Even if I am alone with that knowledge.
It just seems to me though, if services weren’t spending so much time and energy on my paper-self, they could perhaps see me. They could perhaps hear me. They could perhaps help me.
Wren
