“Trauma-Informed Care” Left Me More Traumatised Than Ever
[Content Warning: Mention of suicide, self-harm, and history of child abuse]
Trauma-informed care is a popular term in mental health services these days. Despite its popularity, it’s very difficult to pin down exactly what mental health professionals think the term means and what genuine trauma-informed care looks like in practice. I have lots of thoughts on the co-option of the term; its use as a smokescreen for covert personality disorder pathways; and the vague, virtue signalling manner it is announced as being in use by mental health Trusts. Rather than discuss those topics in this particular blog, I thought I would instead share my personal experience of “trauma-informed care”, and how deeply traumatising it was for me.
When I first approached mental health services, it was due to symptoms of PTSD, meaning, within services, my history of trauma was never unknown, dismissed or ignored as it is in so many. Far from it, my trauma was front and centre… probably too much. Sometimes it seemed trauma was the only thing people saw. It was as if they ran an eraser across me and the only thing left was a faint outline of the things that other people had done to me, the ways other people had hurt me. After a while I felt like nothing more than a walking bag of traumatic experiences. It was difficult to keep giving and giving my story to people who made me feel less important than what had happened to me.
I told a psychotherapist about this in one of our appointments, many years ago. I struggled to find the right words to describe how I was being made to feel, so I told her that under services, I was like a burgled house and mental health professionals were the police. I had been broken into, smashed up, and had things stolen from me. The police had arrived to investigate, had photographed me, taken fingerprints and copious notes of the damage caused, and then left. I, the house, was of no concern to them. They weren’t interested in the children’s height marks on the doorframes, they didn’t care about the old door handle to the bathroom which needed to be jiggled to make it open, they paid no attention to the line of shoes in the hallway, or the Christmas lights still up in the summer because no-one had wanted to take them down. I was just the scene of a crime, nothing more. My therapist did not understand what I was saying, so we moved on.
Over the years, as I shared more and more of my traumatic experiences, more and more of me was erased. I couldn't move or breathe without being told I was doing so because of my trauma. It hurt, to be so completely defined by the most terrible moments of my life, especially when my attributes, the things I was proud of; my drive, my passion for justice, my loyalty, my compassion, were also considered traumatic instalments. As if the people who took so much from me, who I had fought to be free of, had actually created me. I got stuck on this in therapy. I was merely a product of abuse, nothing was attributable to me, even my good parts were theirs. My strengths, my quirks, my unique ways of being were just my reactions to trauma.
After quite a while under psychological services, I was moved to the community team and fell under the care of a psychiatrist who felt himself to be “critical” of usual psychiatric practice. During our time together he brought on board a “critical” psychologist too. She was a self-described trauma and dissociation expert. Everything went to shit very quickly.
In our initial appointment the psychiatrist told me because of my experiences he would be employing a trauma model, and said it was important I be in control of my care. He then went ahead and removed every single bit of control I thought I had. In quick succession my autism was erased, my PTSD/depression/anxiety diagnoses removed, and a letter to my GP said I showed “no sign of mental illness". The psychiatrist told me I could probably fit any number of diagnoses, but even if I wanted one, diagnosis was unhelpful to me. This affected my credibility with my GP (who now saw me as attention-seeking rather than unwell) and my ability to access benefits. I had identified and felt comfortable for many years with my diagnosis of PTSD. It made sense to me, and I was comfortable sharing it to access support because it didn’t reveal any of my private information. Instead of a diagnosis, the psychiatrist worked with the psychologist to formulate me, without me or my consent. My previous therapy notes were trawled through without my knowledge and added to my formulation. All the worst things that ever happened to me, things I had spoken in confidence, were shared between professionals I had never met. All this and more was sent to my GP and uploaded into my permanent GP records without my knowledge, completely exposing me. The only control I had ever had over the abuse I experienced as a child was deciding who to tell, when to tell them, and who not to tell. I chose not to tell anyone for my entire childhood. I kept it to myself, and as strange as it might sound, I felt safe and empowered by being in control of my secrets.
Choosing to share these secrets took such courage. With every single detail I released, I felt a little less in control, a little less safe, a little more vulnerable, but I trusted that the people I was disclosing to would keep my secrets to themselves. I trusted that they would just sit with me in the moment and hear me, not quietly gather up the words I shared with them, analyse them, fire them out in letters, and use them against me. Their formulation of me took the pieces of my life they felt were important and removed everything else. They attempted to create a timeline of events to fit their fixed idea of my difficulties, and when it didn’t fit, they shifted things around in time, jumbling up my life and adding fictional events to create a story which flowed. They created a new person, a new life, and in doing so, they killed the real me.
I asked for medication to help with the depression/anxiety, but I was told my issues were because of trauma, so no medication could help me. I asked for trauma therapy but was refused over and over again. They came up with multiple reasons why subconsciously I didn’t actually want therapy. I was told having no money was just an “excuse” to not seek private therapy. I was told seeking therapy was just “another form of avoidance” of my trauma. I was told that because I’d already had therapy from the NHS but was asking for more, this meant I was unsatisfied with the first lot of therapy, so more wasn’t what I really wanted. I was told due to my severe dissociative symptoms I didn't have capacity to make the decision for therapy, because they could never be sure if it was “me” or a dissociative part asking for therapy. I was told this was all my decision, I was the one who didn’t really want therapy, but I couldn’t communicate it directly, because of my trauma. They indicated that because they were guided by the formulation (which was the same as being guided by me) I was making the decisions.
Their making of decisions for me continued until I experienced a serious suicidal crisis. Then, despite months of being controlled, suddenly it was my decision if I wanted to die. I was refused crisis care, hospitalisation, and had CMHT input reduced because the psychiatrist felt due to my trauma, I would be made worse by intensive care, despite me being the one requesting it. I needed to be hospitalised, instead I was left, not eating or drinking, desperately suicidal. The psychiatrist repeated that this was best, because if I was in hospital, I would have a trauma-based “reaction” to not being in control. Two weeks beforehand I had been told I didn't have the capacity to request therapy, now I was told I had the capacity to kill myself. I was abandoned and almost died, and it was blamed on my trauma. I was just so damn traumatised; I was blocking them from helping me.
When I tried to bring up these concerns with the psychiatrist, my formulation was immediately changed. It wasn’t shared with me, but it was sent to my GP. I accessed it through my GP records. Along with the inaccuracies, speculation, and erasure of me, the formulation was updated to include the reasons I (now) had a personality disorder. This was new. It stated that the complaint I made to my psychiatrist was based entirely in my inability to work with professionals because my history of trauma had damaged my personality. It went on to list a collection of my apparent trauma-based faults and defects which the psychiatrist used to confirm my disordered personality, and quash my complaint. It was absolutely soul destroying.
I told my psychiatrist and psychologist in a meeting that having this non-consensual formulation written and shared was deeply distressing to me, that they had ripped all control from me, and with all the inaccuracies and cruel words, it was basically a character assassination. I said having all my secrets shared made me feel sick, scared, and humiliated. I begged for them to undo it. I was told the NHS has good information governance, so it didn't matter who they shared it with, no-one was going to put it on the internet. I said I wanted my diagnosis of PTSD back, because I couldn't share my formulation with the DWP or my university, because it was so private. They said no, I would be harmed by being “labelled”. They said the formulation was part of the "trauma model" they were using and it was the best way for everyone to support me. They did not understand that I didn’t feel labelled by PTSD, but protected by it. They did not understand that the formulation was exquisitely painful to even think about, because it exposed my secrets. They did not understand that every single moment my secrets existed outside of me, I felt unsafe. They did not understand that administrators and secretaries and staff I hadn’t met who had access to these secrets were still real people, and every single person who read my secrets without my permission took something from me. They did not understand that they were slowly killing me. Eventually (almost a year after it went in) they agreed to reformulate to remove the personality disorder, but once again, I was not involved in the formulation.
I was being so heavily regulated and restricted under their “trauma model” I was permanently triggered and terrified. In supposedly “freeing” me from the shackles of psychiatric paternalism, my psychiatrist had enacted the most intense levels of neo-paternalism, I couldn’t move or breathe. At this point I would have taken some old-fashioned paternalism with open arms, because at least I would have known where I stood. Instead, I was being constantly gaslighted, told I was in charge and making the decisions, when I had no control. Told it was really me who was deciding not to pursue therapy; that it was me leading the appointments; that the reason I was upset and not getting better was because my trauma meant I was never satisfied; my trauma meant I could never see when people were helping me. In front of my eyes, my psychiatrist morphed into my childhood abuser. I was 8 years old again, afraid and alone.
I tried to escape by requesting a new psychiatrist, then no psychiatrist, then by moving to a GP out of the CMHT catchment area. I thought this would mean I would be transferred to my local CMHT, but my psychiatrist blocked the move and kept me as an out of area patient. He felt it would be best for me to stay with the same team, because they were working together from the formulation.
Things came to a head in an appointment with the psychologist. Despite me gutting myself to share all my trauma over the years, the psychologist wasn’t happy with just reading details of some of the more disturbing parts of my trauma. She wanted me to say them out loud to her. She wouldn’t take no for an answer. It was important, she said, for her to know exactly what had happened. I tried to push myself to tell her, afraid of doing something wrong and being punished for it, but I became so distressed I began drowning in a flashback and lost all connection with reality. In a dissociative state, I severely self-harmed. The appointment ended so I could receive medical attention, and the psychologist made an appointment to ring me the next day. Overnight, she formulated what had occurred, and the next day, without even asking me what I thought, she presented this formulation to me as fact. In the psychologist’s mind, I had planned to harm myself deliberately, as a means of manipulating her. She told me that because I had been abused and harmed by others, I had wanted to inflict that same fear, powerlessness, and pain on her. The implication was that I had abused her in the same way I had been abused as a child. My trauma was not just erasing me anymore, it was now being used to erase poor clinical practice; it was being used to turn a painful, distressing incident which left me permanently scarred, into a deliberate, manipulative attempt to hurt her; it was being used as a barrier to her reflecting on her actions; a means of absolving her of her upset and guilt; a way to centre her pain. This was the end for me, I had now been completely written out of my own life. I could no longer cope, I had to escape. The only thing I could think was to end my life.
The psychiatrist and psychologist believed by centring my trauma (and subsequently side-lining me) they were practicing trauma-informed care. They believed that by viewing absolutely everything through a trauma lens, I was being de-pathologised, while in reality I was being de-humanised. They believed that because I wasn’t being detained or restrained, they were not being paternalistic, but by refusing to allow me to make any decisions, and using my trauma to dismiss me, they enacted the worst kind of neo-paternalism, gaslighting me into believing I was being empowered and in control. Telling me I wanted to be neglected.
Slapping labels on people, over-medicating, enacting restrictive practices, ignoring trauma… these all have the ability to dehumanise, to obliterate the individual beneath, to erase our personhood, our stories, our experiences. But doing the exact opposite – blanket removing diagnoses, refusing medication, withholding care, and seeing nothing but trauma – is not the panacea. Trauma-informed care isn’t as simple as traveling in the opposite direction of old practices. It is not just changing the question from “what is wrong with you” to “what happened to you” while keeping the same clinical structure. Trauma-informed care should be about pulling down the old structure and starting afresh, with the individual sat in front of you at the centre. Seeing them, really seeing them, as an individual. It is not one way of working. It should be dynamic, constantly evolving and shifting around each person, acknowledging that we are all individuals who have different needs, and not only that but those needs also continuously change. Trauma-informed care should not be static. Mirroring our individuality, it should look different for each person.
My version of trauma-informed care involves being able to have a diagnosis, so that I can maintain confidentiality and dignity when I share it with organisations like the DWP and my university. My version of trauma-informed care means being able to access medication and hospitalisation when I need it, without feeling either coerced or dismissed. It involves being completely and equally involved in every aspect of my care – no secret meetings, formulations, or decisions without me. It means being in control of my information. Someone else’s version of trauma-informed care might include not feeling pathologised by a clinical diagnosis, but only working with a formulation. It might include never wanting to be in hospital and never wanting to use medication. It might mean wanting to work on practical issues without being sent to therapy, and not wanting to be involved in meetings.
In my mind, associating trauma-informed care with any one method of practicing automatically disqualifies it from being trauma-informed, because it forgets to centre the one thing which is important: the person being cared for.
I experienced years of intense “trauma-informed care” which dictated to me my wants and needs, rewrote my life experiences, destroyed my sense of self, erased my personhood, violated my boundaries, replicated my childhood abuse, and ultimately (and ironically) left me more traumatised than before. It all could have been avoided if someone had just listened to me, and seen the person behind the trauma.