[Content Warning: Mention of child abuse]
Personality disorder (PD) has always been a controversial and disputed diagnosis. Since its conception, survivors and allies have been speaking out and campaigning against its use, trying to describe the harm it causes and the abuse it perpetuates. In recent years there seems to have been somewhat of a recognition or acknowledgement of the voices against PD by larger institutions such as the Royal College of Psychiatrists, and NHS England. But instead of real meaningful change (where we throw the concept into a burning wheelie bin and everyone cheers) what is happening is a white wash. Without a single alteration to the concept of personality disorder or the treatment of people labelled as such, services are hiding it beneath new names like “complex emotional needs” (CEN), and rebranding PD care pathways as “trauma-informed services”. There are professionals who still insist on the validity and usefulness of the personality disorder construct, arguing that the problem with PD is "simply" the stigma which accompanies it, like a particularly difficult-to-shift smell. As if all it needs is a quick spritz of Febreze. They do not hear those of us when we say that it is not just the stigma. It is not just the discrimination. It is not just the name. It is the concept itself.
A person’s personality is the core of their being. The ways we think, feel, perceive, act and react, are unique to us all as individuals. It is our personality which differentiates us from others - that distinctive “essence” of being - it is who we are. Our personality is like our soul. To be told the very foundation of who we are is wrong, broken, damaged, sick, disordered… is a crushing moral judgement which can reach inside a person and obliterate their sense of self. We are reduced to nothing. It differs entirely from the diagnosis of an illness or injury - something which affects us, but does not impact our personhood. Personality disorder goes straight to the heart of the person. We are left with nothing to cling to as people in positions of power insist that not only are they singularly qualified and authorised to declare us disordered, but only they can provide the treatment to make us normal. It becomes a clinical imperative to rewrite us, down to our bones. I think a lot about the words of a former TEWV patient I read in the Langley-Price report: “‘EUPD’ isn’t like a cancer which can be cut out and taken away. Being told I had ‘EUPD’ was being told I am the cancer”.
Remove the clinicians and their abuse; remove society and the understanding of PD the public have lapped up from the trickled down clinical bigotry; remove it all, and I still cannot stand in front of a PD label shaped like me and not feel the deepest despair. Because can't you see?? I want to shout. Can't you see what you are replaying in our lives? Can't you understand that you are reinforcing the very harm which we have come to you to be healed from??
Years ago I hit a wall early in my first experience of therapy, a wall which blocked my route past a point I just couldn't stop thinking about. In trying to overcome the narrative I had been fed by my abusers (that I was inherently bad and as such, had brought the abuse upon myself) I veered into a new narrative: I was a product of abuse. I realised that once the abuse started, the person who I would have been ceased to exist. My therapist told me I could grieve for that person, for that loss, but what I felt deeper and more viscerally than grief was the desperate and immediate need to climb out of my body and my life. Because they didn't belong to me. And what was worse, I believed my reaction to thinking about how my body wasn't mine was also not mine. Because my thought processes had been impacted. The way I saw the world. The way I saw myself. The way my brain worked. It was like a hand clamped over my mouth. I was the walking collateral damage of my own life. I couldn't breathe. How could I allow myself to keep existing? They had touched every part of my body. Places even I had not been. Extracting what they wanted, whatever they wanted; violating every inch of me until I had wanted to burn my entire body and stand, screaming for eternity in the flames. But there was more, and before then I had not put it together. I was their creation. I was not the child who had existed before her life collided with theirs. She had died then and I had been born. The self-loathing which arrived with this understanding cannot be quantified. It didn't just fill me, it became me. It infected everything I touched. I felt so much hatred and disgust and contempt for myself it was hard to move through the world without worrying that at any moment I was going to implode and take everyone with me. Maybe I wanted that. Maybe then people would finally see me and truly understand the immensity of what I was carrying. Words fail me here. How I felt can only really be described by movement and sound. It felt like the most harrowing, heart-stopping guttural scream a person could ever imagine. The type of scream which places so much distance between you and the person screaming, it doesn't matter how tightly you wrap yourself around them, you will not ever reach them. Simultaneously it felt like digging my blunt, bitten fingernails into the skin on my chest with such force that the skin and bones broke open and my organs writhed, but refused to disintegrate, exposed to a burning sun mere feet away.
I thought about being small. The child they hurt had never told anyone about what was happening, because of the fear of exposing to everyone how bad she was. It was a palpable, all consuming fear. She didn't know what the word was then, but I do now. The word was shame. She carried their shame, and they had so much shame.
So this is where the work really began, undoing my belief that every part of me was bad. My NHS therapist named it "self-esteem issues" and a "disturbed sense of self", but she did not understand how hard it was to keep moving, every single day, with the weight of that shame on me. That I could even stand upright was a fucking miracle. Years I worked on trying to untangle myself from the men. Both in therapy and by myself. "They hurt me but I still exist in the same way as before" I would tell myself. "It is me" I would say, looking at childhood pictures from before the abuse. "I am not bad". I would say that last one the most. I worked on reconceptualising myself, to get to a place where I no longer believed I was born from abuse, a place where I no longer believed the words of the men that I was bad in my soul. I told myself that it wasn’t me who was bad, it was them.
Hours, days, weeks, months, years of my life were sunk into trying to believe I wasn't inherently a bad person, a person to blame, a person who should carry the shame, the reflection of an abuser.. It was such hard work, but it was work worth doing, extracting the words which had been carved into my skin, untangling what my abusers had wanted me to believe from how I actually felt. I made progress with this. I began to be kinder to myself, pursued an education, found a loving and safe long-term relationship. One day it all came to a halt. It stopped. But rather than slowly rewinding itself like sticking a pencil into a tape cassette, those years of work simply ceased to exist, the day the words "personality disorder" appeared on a letter from my psychiatrist to my GP.
Here was another man in a position of societal power. A man who people trusted. A man who held automatic and complete authority over me. The first man had held moral and religious authority due to his position within the church. This new man held clinical authority due to his position within the medical field. So much time had passed in between them, but they were saying the same thing. “There’s something inherently wrong with you. Your soul is broken. You are bad.” I had tried so hard to escape, but here it was, in black and white. Written into notes I could not access, destroy, hide, alter, or contribute to. This time, the message held even more weight because it was able to sit openly, in the light, and exist as an accepted and unquestioned truth. Everything I was told as a child, the marks my abuse left on my skin and on my soul, were highlighted, framed, and hung round my neck where they could be seen by everyone. An image of my true self.
The belief I had grappled with for all those years - that I had been born from abuse, and as such, all my subsequent thoughts, feelings and behaviours were the product of abuse - was now diagnosed as true. It wasn’t that I had sustained a psychological injury from years of unending abuse. It wasn’t that the words of the men who had destroyed so much of my life had wrapped themselves around me, strangling my true thoughts and feelings. It wasn’t that I simply needed someone to help me believe that the men were wrong, and I still existed beneath their darkness; whole, beautiful and worthy of kindness. The application of the words personality disorder and the description of how my apparent dysfunctionality had been brought about by abuse served to prove that the original narrative I had arrived at, which had caused me so much pain, was actually correct. I was bad and broken. Nothing good lay beneath. The return of the self-hatred was extreme, but it was not a solid crushing hatred made of anger, it was the tired self-hatred of a person who has been entirely defeated. The exhaustion of hating myself, of fearing myself, of trying to be a better person.. I folded in on myself and released my grip on the world. What was the point of carrying on?
It has been several years since this happened, and I am not the same. I am left a shell, not back where I was before, but back further even than the start. Now I repeat a mantra, I am not bad, I am not bad, I am not bad, all day every day. Sometimes I say it hundreds of times a day. I say it to my partner and she says it back to me. "I'm not bad am I? No babe, you're not bad". "I'm not bad. You're not bad sweetie". “I’m not bad am I? You’re not bad, I promise.” Over and over and over. I scream it when I have flashbacks. I scream through tears that I’m sorry, I’m so so sorry for being bad. “I didn’t mean to be bad” I wail and choke. “I’m sorry I’m bad, I’m sorry I’m bad, PLEASE. STOP. I’M SORRY”... It fills me up like I will never be able to breathe or move again. Maybe I don’t deserve to breathe or move again. I beg my partner to kill me. In those moments all I want is to die. I cannot exist under that weight. The shame pools into every single one of my cells until nothing else matters. There is no doubt that I am the worst person in the world, because everyone important says so.
And so this is where I am now. Damaged not simply by the "stigma" attached to the personality disorder label, nor the negative service responses I have received since it entered my notes. I am damaged first and foremost by the application of a label which supports everything I was told by my abusers to keep me under their control... and every terrible thing I believed about myself as a consequence.
When I see or hear professionals continue to endorse the use of the personality disorder label, it's like being told that the way it has destroyed my life, and the lives of my friends and family, is justifiable. That my pain and my despair is irrelevant. That the friends and peers I have lost to the label do not matter. But the truth is that they do matter. We matter. I matter. And we deserve better than this.
In the end, whatever you think about the validity or utility of 'personality disorder', diagnoses are supposed to help people. When you reach a place where a diagnosis is causing immense harm, reinforcing messages of abusers, and putting people in the ground, something has gone really really wrong. And if you, as a "professional" can't see that, I believe with my entire being that it is time you stepped away, made room for professionals willing to acknowledge this reality, and reflected on whose needs you have prioritised by supporting the continued existence of the personality disorder construct. Perhaps also reflect on your humanity, and consider why 40 years of survivors describing the harms they have endured because of the label have failed to move you; why you have refused to hear and believe us; why our lives have mattered so little to you; and why you have centred yourself, over and over again, in other people's care, in other people's pain, and in other people's lives.
Wren