CONTENT WARNING: contains references to sexual assault and suicide.
“I feel that I cannot win. I feel I have no agency. My trauma is belittled. Mental health professionals have labelled me as manipulative, demonstrative, childlike, badly behaved, more difficult than others, and less deserving of care.”
Around 2017 I was diagnosed with EUPD (Emotionally Unstable Personality Disorder, also known as Borderline Personality Disorder). In 2021, when I began experiencing serious and currently ongoing difficulties with my mental health, I requested a re-diagnosis, which for reasons unknown to me, I was denied.
For me there have, and continue to be, extremely negative consequences of having this diagnosis. In my experience, nothing positive has come from it – mainly because it has overshadowed my trauma and therefore influenced the treatment offered. It has negatively changed the way people treat me. It’s difficult to write this because it’s deeply personal and messy. But I want to share my story with you so I’ll give it my best shot.
At the start of my mental health crisis in early 2021, I requested trauma therapy, making it clear why I felt I was experiencing complex post-traumatic stress disorder (CPTSD). I am the only person who knows everything that I have experienced. Every trauma, every upset, every thought. But it was made abundantly clear to me from the start, and to date, that “the system know best”.
The focus on me now as a “personality disordered” person has meant that my voice is lost. I had no say in the type of treatment I felt would help me most and I ended up feeling forced to comply with unhelpful treatments, yet also hopeful that maybe, just maybe, it might help.
I was desperate and I felt the mental health system had all the power.
“I’m sure for some it helps. But there was so much they did not know about me.”
I should say that mental health services agreed that EUPD is trauma related and that DBT (Dialectic Behaviour Therapy) is the “gold standard” treatment for it. I’m sure that for some it helps. But we are not all the same. And there was so much the services didn’t know about me. It’s hard to share deeply personal things you feel shame about with strangers. How could an accurate assessment be made?
I still don’t understand what their reasoning was for not allowing a second opinion. I believe at least part of their reasoning is that an EUPD diagnosis allows professionals to stop believing or trusting the person who they give it to. I experienced this as medical gaslighting.
The disregard for my opinion had a negative effect on my recovery and the therapy process. To this day, professionals continue to badger me about doing DBT again, which I feel further hinders my recovery and means I feel I am not being heard properly and that I am the problem.
The diagnosis of EUPD puts blame on the person who has experienced the trauma for their response to the trauma. This means much of the media and the general public often see anyone with a “personality disorder” in a negative light. This in turn belittles our experiences of trauma and distress. It made me feel more trapped and therefore more suicidal, hopeless, worthless and scared.
I spent nearly all of 2022 in a psychiatric unit under Section 3 of the Mental Health Act for ‘treatment’. Towards the end of this time, I was finally able to speak to a practitioner who used a diagnostic tool which showed I met the criteria for CPTSD – as I had told them from the beginning.
However, despite these findings, the service would not add or change my EUPD diagnosis. But they did agree to refer me for EMDR (Eye Movement Desensitization and Reprocessing) – an apparently very effective form of trauma treatment. Why did it take years for this treatment to be recognised as a possible treatment for me, when I had asked for trauma-based treatment right at the start?
I finally came out of hospital in late 2022.
I was told I was making excuses for everything – when I was actually giving them facts and reasons.
Recently I was feeling everything that comes from experiencing rape, assault, coercive control, unjust treatment by mental health services, family court, social services, the justice system, the church, and the continuation of this treatment. My brain went into melt-down and I attempted to end my life.
Officers then attended my home. We spoke for some time, and they tried to offer consoling words -although it didn’t really help being told that I’m making excuses for everything (something mental health teams also say), when in fact I was giving them the facts and reasons. They did what they possibly could to help me and then left – despite me saying that I was actively suicidal.
I felt so frustrated, hopeless, worthless, in so much mental anguish, and such a pain in everyone’s backside.
My negative experiences with the mental health services rang through my head and the blame they put on me was too much for me to handle. The “contingencies” in place were obviously not working; I have told them numerous times they are either not useful when I am in crisis, or else actively put me into crisis. So my brain was telling me “Where do I go from here? There is no help. I’m trapped and I want it all to stop. I’m useless to everyone. Everyone would be better off without me. Maybe it is me that is the problem, maybe they were all right”.
I am now criminalised as a result of my response to my distress and trauma.
As a result of my response to my distress, I’m now criminalised for all the trauma in my life, and for not having the capacity to cope with it. I understand that some of the ways I attempted to end my life are considered a crime. I can’t deny that. But no-one was understanding of why I did it. No-one can know what it feels like in that moment unless they have experienced it. I was completely sucked free of fight, of hope, of life. I was not okay. All I wanted was for it all to stop, forever.
During this I ended up in a police cell and having a mental health assessment. The change in the police’s attitude toward me after they spoke with the mental health team was stark. They treated me like dirt and massively abused their position of power, further pushing me into hopelessness.
I had an interview. I told them at the end of the interview that I was scared I was going to make another attempt on my life. I was asking for help. For my honesty, I got the privilege of being remanded and appearing at the Magistrates Court in the morning. An officer told me that the mental health team had said that I was “just badly behaved” and that I “don’t have a mental health issue”. This is something the mental health team and I interpret differently. They state they said I was “un-detainable”. So there I was stuck in the middle of a debate/miscommunication or whatever it was between the police and the mental health team, whilst I am suffering.
Incidentally, when I arrived, the custody sergeant said “this is the third one of these today” which to me suggests significant pressure on the police to be mopping up what the mental health services can’t or won’t do, particularly with regards to EUPD sufferers. When is ever a helpful and a trauma informed response to distress to criminalise people facing intense mental health difficulties?
The system only pays lip-service to holistic, trauma-informed care.
In my experience there is too much focus on the biomedical model of mental health and the system merely pays lip-service to the value of a truly holistic, trauma informed model – even though there is a better understanding of impacts of social, environmental, political, religious, physical etc factors on mental health. Services must move to a model where all services work effectively together to provide the correct care for individual patients at the right time.
I believe lots of practitioners believe the current system does this and can’t accept that there is harm and mistakes are made and that there needs to be a complete overhaul of services to make them work far more effectively for the people who reply on them. I can see how it might be too overwhelming a task and shame inducing for the professionals trapped in the current system.
Due to various problems within the mental health service, my EMDR has not yet begun, so for months I have been left with no trauma therapy. I am now due to start EMDR this month, so fingers crossed it will happen and it will help. But I am terrified it will get worse before it gets better – and how on Earth will I cope when the current services are ineffective and sometimes neglectful of supporting me, even criminalising me?
I do understand that some of this is because of chronic underfunding of services and because the biomedical approach had dominated for too long. I am really pleased to see the new joint guidance from the WHO and UN calling for a move away from a biomedical approach towards a holistic and human rights approach. This will help massively if we can get it into practice.
Being left with no trauma therapy and little other suitable support when in crisis has taken its toll on my wellbeing and I have attempted my life several times since leaving hospital. Some time ago I made the decision to step away from the crisis team because they were so unhelpful, downright rude and triggering. So, naturally, I am then accused of non-engagement, just because I am trying to protect my own mental health and ‘take the responsibility’ that the mental health teams are saying I am not doing.
They attempt to coerce me and control my behaviour because I disagree with them. This then affects the way other services treat me.
I feel I have no agency.
So, in summary, with the diagnosis of EUPD, I feel that I cannot win. I feel I have no agency. I cannot easily get the help I am asking for and certainly not without jumping through a million hoops before anyone will take me seriously. My trauma is belittled. Mental health professionals have labelled me as manipulative, demonstrative, childlike, badly behaved, more difficult than others, not having a mental health issue, and generally less deserving of care. This effects the way other services view and treat me and all of this increases my feelings of being a time and resources waster as well as worthless, hopeless and far more suicidal.
I am criminalised for my trauma. I feel like my human rights have been removed, I have no voice and mental health services have all the control. In this current system, it is impossible to stand up for your rights as a lone wolf suffering from trauma. It’s only if we all stand up together and share our collective stories that we can show this is not about what’s wrong with us, it’s about what has happened to us – and what has continued to happen when the right support is not available.
Note: I have chosen to write under a pseudonym as I fear that openly naming some of the systems involved in my experiences may further worsen my situation.
Speak your truth: your own experiences can help create change
If you want to join me in sharing your personality disorder or trauma and accessing mental health stories you can take part in Platfform’s Truth Project.
Platfform are campaigning for a review of the use of the diagnosis of PD. Add your voice to our call for change by sharing your story. We will share these with Welsh Government and use them to strengthen our campaign.
If you are in a mental health crisis, please read this paragraph
If you have been affected by anything in this story and would like to talk to someone you can call Samaritans on 116 123. You can also call the national mental health support line for advice on 111 (press 2.)