The Labels That Retraumatized Me as a Trauma Survivor

From what I’ve witnessed first-hand and what I’ve heard from my friends with mental health problems, mental health teams and the mental health system absolutely have the ability to inflict harm on their clients. In my case, my history of suicide attempts isn’t because I have a “disordered personality” as they brainwashed me into thinking. In a dark world where my pain already felt inconsolable, suicide has always seemed like the way to escape the extra trauma of how badly I’ve been treated by society and the very services that were supposed to help me but instead caused more harm.

• What is PTSD?

At the time, I also couldn’t face trying to live any longer in a world where my psychiatric diagnosis meant I couldn’t receive healthcare and medical treatment for my physical health problems or physical pain. I faced years of invalidation for my physical health problems, and in fact, I was diagnosed with Ehlers-Danlos syndrome almost two years ago, some 15 years after the initial onset of my physical symptoms, which were far too readily blamed on my psychological problems.

I was told by the CMHT (community mental health team) that they have a high proportion of patients with EUPD (emotionally unstable personality disorder) who can be helped by NHS resources. I can categorically say that from my experience, they definitely don’t have the skills, knowledge, or resources to help traumatized patients. For that reason, I am speaking out about the extra harm CMHTs can sometimes cause their patients.

Even if traumatized people have a higher suicide rate due to the emotional pain of the trauma they’ve experienced, I’ve seen how giving them a borderline personality disorder diagnosis makes it far more socially acceptable for the mental health team to absolve themselves of “failure in care” when a verdict of suicide ends up in the press.

Fifteen years ago, I disclosed almost a decade of sexual abuse as a child and teenager and I was self-harming to cope with the emotional pain of what I’d been through — the result was that for the rest of my life I’m now, in my view, cursed with this stigmatizing borderline/emotionally unstable personally disorder diagnosis infiltrating every aspect of my life. I’ve tried extremely hard ot get EUPD removed from my medical notes but they simply do not want to admit how wrong they got things. The stigmatizing label still profoundly affects the care I receive for highly complex issues related to my EDS.

As so many people seem to be misdiagnosed, even if I tried to find statistics for this article about the percentage of people who have been sexually abused and end up in the mental health system — the statistics would be wrong.  Similarly, if I try to find statistics about the number of people with a BPD/EUPD diagnosis who have been abused — the statistics would be wrong. So many sexual abuse survivors are trying to survive again living with a (mis)diagnosed disordered personality. This is so wrong. We’ve already been through so much unnecessary trauma. Here’s a sampling of articles that explain the issue:

• Child abuse and violence survivors are being misdiagnosed and re-traumatised by the NHS
• Are sexual abuse victims being diagnosed with a mental disorder they don’t have? 
• ‘We have to speak out … and be heard’: Life after sexual abuse
• Therapists too quick to assume someone has a personality disorder

To quote one of the articles above: “I’m a survivor of childhood sexual abuse and the mental health system.” Wow, what an incredibly powerful statement. One that I sentimentally concur with myself.

I’m prepared for the inevitable heavy criticism of what I am going to say. And to make it clear, I’m not anti-the-crumbling-NHS at all, especially during the current COVID-19 pandemic, nor complaining unnecessarily. Certain people might even question my sanity for writing this article! I am not “mentally ill” in the way the mental health team (and society) have for many years brainwashed me into thinking I am. I’ve emerged from that brainwashing, thank goodness. I have more insight now than I’ve ever had: insight into just what harm mental health teams can cause to their patients.

To borrow a phrase from The Compassionate Mind Foundation (founded by Professor Paul Gilbert OBE), “You have to live to help, not harm.” Most doctors (and in my opinion, especially psychiatrists) need to think carefully about their duties as a doctor and the codes for Good Medical Practice when it comes to treating sexual abuse survivors and giving them a personality disorder diagnosis. I can sadly vouch for how damaging this diagnosis can be to the rest of your life.

It’s important we acknowledge that psychiatry can be used as a way to control society. For example, they kept telling me what was wrong with me, so I found myself conforming my behavior to fit into the categories of the nine diagnostic criteria of borderline personality disorder. After all, everything I did and every word I said the CMHT blamed on my “personality disorder.” Quite simply, psychiatry had taken my pain and suffering from my childhood trauma and totally misinterpreted my life, behavior, strengths, weaknesses, and who I am as a human being to categorize me and fit me into their medical diagnostic model so they could be seen to provide “treatment” that they perceived matched my symptoms. They were wrong. Very wrong. I don’t even have the symptoms of that diagnosis and never did — but they brainwashed me into thinking I did. I begged for help for severe OCD, but for many years they tried to even deny the fact I have OCD and they blamed it on my “personality disorder.” Due to the fact that I was still living in an abusive environment, the CMHT totally misinterpreted what they saw as splitting, idealization/devaluation, and black-and-white thinking. Years later I’ve had to educate them myself on abuse cycles, trauma bonding, love bombing, narcissism, and gaslighting.

I kept being told I have problems regulating my emotions and therefore have EUPD. I’ve done a lot of reading in the past couple of years of works written by world-renowned trauma experts such as Bassel von der Kolk (“The Body Keeps the Score”), John Briere (“Treating Risky and Compulsive Behavior in Trauma Survivors”), Pete Walker (“From Surviving to Thriving”), Professor Paul Gilbert, Dr. Stephen Porges (“Polyvagal Theory”), and journal articles by Herman Cloire (“1992 – Complex PTSD”). I now understand so much more and realize that what the CMHT told me were “dysregulated emotions” are more in fact “emotional flashbacks” and part of my complex PTSD. I’ve had the epiphany of recognizing that these emotional flashbacks tip me into my suicidal thinking because suicide is an escape route from society causing me further trauma.

I’ve done some very serious self-psychology through self-learning more and more about trauma. An emotional flashback is when a trigger, no matter how small, makes you re-experience the same emotions you would have gone through during the original trauma. This looks like dysregulated emotions, but I’ve never had the help to process my past traumatic experiences and my trauma is still ongoing. Services that were supposed to help me effectively punished me and retraumatized me, reinforcing my worthlessness, shame, and self-hatred. Blaming totally natural and valid human emotional reactions on a “disordered” personality is fundamentally wrong and very damaging. It’s pejorative and very stigmatizing. It is saying someone’s personality is to blame for their problems — taking away what has happened to them being the cause of their “problems.”

When you have a BPD diagnosis, much of your behavior is frowned upon as manipulative, angry, acting out, dysfunctional, self-defeating, or impulsive and ego-defensive, rather than coping strategies for triggered distress or reactive avoidance to distract, numb, or block the distress associated with triggered highly painful and overwhelming memories and emotions. In “Treating Risky and Compulsive Behavior in Trauma Survivors,” Briere approaches what have traditionally been seen as “maladaptive behaviors” not as having a goal of self-destructiveness, but rather in terms of desperate (emotional) pain relief and emotional survival. Avoidance (problem) behaviors such as self-harm, gambling, and addictions are looked upon in terms of reality-based, adaptive strategies from limited emotional regulation skills (or overwhelmed emotion regulation capacities) due to unprocessed childhood trauma and early attachment problems. Someone who has been through trauma is by far less likely to be able to tolerate, let alone regulate, painful internal experiences, leading to reduced emotional regulation capacity (whether it is biological or psychological in origin). Just because someone self-harms doesn’t mean their behavior is simply maladaptive or impulsive. Just because someone self-harms does not mean they should be given a BPD/EUPD diagnosis. I have now taught myself how to self-regulate my nervous system after severe early childhood attachment trauma and I haven’t self-harmed for several years now.

Fast forward 15 years, and I was discharged from mental health services in 2019 realizing that I am definitely not this person the CMHT or society thinks I am. Labels are for containers, not for people! Getting my Ehlers-Danlos syndrome diagnosed February 2020 and better management and treatment has allowed me to move on. I am now back at uni doing a master’s degree.

People with borderline personality disorder are treated in the system as “difficult” patients. When I attempted to challenge them on my EUPD diagnosis, they claimed that what matters to them “are the symptoms their patients have, not the diagnosis.” That stung like hell. How dare they tell me that after I’ve repeatedly asked for very specific help with specific symptoms and have been refused the help I needed multiple times? Also, if “diagnosis doesn’t matter” — then they should try living my life cursed by a personality disorder diagnosis. A diagnosis that not only deems you unworthy of the help you need from other specialist services too, but a diagnosis that leads to society traumatizing you even more. Not just that — but the medical profession traumatizing you even more.

As far as I’m aware, fundamental factors such as epigenetics, dysregulated neurocircuitry from attachment theories, parent-child attachment, role of caretakers, developmental traumas, early parental abandonment were just not taken into account anywhere near enough to explain repeated complex trauma being reasons for my “behavior” despite my family history. Instead my personality — who I essentially am as a person, a human being, was labelled as fundamentally flawed. I can categorically say they severely misinterpreted who I actually am and fitted my life into their nine diagnostic criteria, telling me that my emotions are dysregulated, that I’m ”impulsive,” I have ”unstable relationships.”  Although the diagnostic formulation in the DSM-6 is slightly different, in terms of the 5 out of 9 diagnostic criteria for an EUPD diagnosis as set out in the DSM-5, I tried to challenge my diagnosis in the sense that my “self-image” is persistently negative and not unstable, my behavior is far from impulsive and most often takes meticulous planning and pre-organization, I’ve very rarely displayed anger or aggression outwardly, and my relationships aren’t unstable (rather I have very few friends, the friendships I have are very strong and rewarding, I prefer my own company, and I certainly don’t fear abandonment). I have extreme feelings of shame, guilt, hopelessness, and persistent extreme self-hatred congruent with a Complex PTSD diagnosis. I also go to great lengths to avoid certain people, places, situations, and conversations likely to re-activate painful past memories of past trauma.

More and more research is looking into the long-lasting effects that Adverse Childhood Experiences (ACE’s) have on the rest of people’s lives. However, very sadly despite complex post-traumatic stress disorder gaining more recognition in the U.K. through inclusion in the psychiatric diagnostic manual, the ICD-11, I’ve heard members of my CMHT refuse to adopt this diagnosis by claiming that “complex trauma” is exactly the same thing as EUPD so it’s irrelevant what name you refer to it by.

I’m wondering, through my own experience, about the reasons behind this. I can’t decide if most mental health professionals are just under-skilled and under-trained, or if there are political or financial motivations not to recognize C-PTSD as a diagnosis in its own right — in the sense that there simply aren’t the resources to provide trauma-based therapies such as EMDR. Even if there is a lot of overlap between Complex PTSD and EUPD, they are still two separate diagnoses. Mental health professionals try to be clever and are insisting to their patients that EUPD and “Complex PTSD” are “exactly the same thing,” “interchangeable,” or “overlap” or “so similar” that “the name is irrelevant.” This invalidation of C-PTSD negates the fact that in order for C-PTSD to be diagnosed the patient must also meet the diagnostic criteria of PTSD such as re-experiencing, avoidance, nightmares, flashbacks, hypervigilance, and hyper-arousal. Symptoms which I very specifically asked for their help with — only to be told to use my “mindfulness skills” (even when I explained how much worse mindfulness can make these symptoms in some trauma victims and survivors, myself included).

It is all about diagnosis. Even if the CMHT claim “diagnosis is irrelevant” (because it’s the symptoms they help their patients with), your diagnosis becomes who you are to the rest of society. I no longer feel like a human being. An individual. I am a diagnosis that deems me unworthy. Its ideological violence — society distances itself from trauma survivors because of a supposed “disordered” personality. This is at the expense of compassion which in itself can be incredibly healing. It’s saying the trauma survivor’s personality is the problem – not what happened to them. Survivors need support and compassion, not to be disparaged. CMHTs need to think much more along the lines of not “what is wrong with you” but “what has happened to you?”

The mental health team themselves stigmatized me because of the label they give me in an attempt to absolve themselves of poor treatment, invalidation and lack of proper dignified trauma-informed care. By invalidating and disregarding my pleas for help with specific PTSD and OCD symptoms, they have actually made me a lot more unwell than I needed to be and their label has drastically made my life so much harder. This label, this judgment of my “disordered” personality (because of the way I cope with the trauma I’ve never had the help to deal with, or to overcome), gives me no credibility. I tried to report another form of abuse as an adult to the police: because of my personality disorder I was asked if I had stopped taking my medication and treated like I was paranoid, delusional, and a liar. They didn’t even believe me… for a few years.

Psychiatry sadly has a knock-on effect. I don’t know if the appropriate term here is snowballing effect or butterfly effect? Fifteen years ago, a psychiatrist decided that, because I self-harmed and had been sexually abused, I have borderline personality disorder. Any subsequent psychiatrists won’t change this diagnosis even if a few I’ve seen say I have complex PTSD and traits of EUPD/BPD. Each new psychiatrist just believes my medical notes and the opinion of their previous colleague: that I have EUPD. Similarly, all my consultants for my physical health problems believe the CMHT diagnosis of EUPD because the CMHT are seemingly looked upon as the “experts.” This BPD in my medical notes very severely affects the care I get for my multiple and very complex physical health problems. I am even struggling to get help in the private sector. Private trauma therapists certainly don’t want anything to do with me because of the BPD diagnosis.

We’ve already been through enough trauma. We don’t need to be re-traumatised by a misdiagnosis or by the very services supposed to be helping us. If sexually-abused traumatized patients get the correct diagnosis and appropriate help, we could have every chance of a more fulfilling life and to go on to have a career, marriage, and even children.

The behavior of a lot of the so-called professionals on the mental health team was exactly the same “gaslighting” as I received from some of my abusers. Considering the amount and extent of the abuse I’ve been through, the CMHT should be encouraging me to self-advocate and stick up for what is right. However, when I tried to stand up for myself they blamed their inadequacies and failures back on me, my personality disorder and anger issues. When in actual fact I’ve been more patient with them than 99% of the human population would have been — because I have so much self-doubt and such a low self-esteem!

I think CMHT’s need to move away more from a medical model — the DSM, ICD, etc. — and move more towards a bio-social model and trauma-informed care. Patient-centered care, where they listen to what their patients’ symptoms actually are — not trying to fit every patient in their medical model box to diagnose them with conditions they don’t even have, in order to suit their needs. This is dehumanizing. One box doesn’t fit all. Doctors treating physical illness need to stop the “all in your mind” attitude with sexual abuse survivors.

In “Cracked: Why Psychiatry is doing more harm than good,” there is a very pertinent statement:

“In clinical practice there is often too much an emphasis placed by some on the diagnostic criteria of the DSM (in other words, if a person has ‘this set of symptoms’ then they have ‘this disorder’). This approach ignores other things that are important when making an assessment, such as the context in which the person became ill.  So there has been a move towards an over-emphasis on diagnostic criteria, and a neglect of assessing the social context in which the person is living.”

From my own personal observations what is highly shocking is the lack of knowledge that mental health “professionals” actually have about mental health conditions and how to treat them. However, even when I took my own knowledge gained from reading books and academic journal articles, they refused, in their arrogance (since they are the “experts”), to acknowledge the validity of the articles or books I read. I even took along information from Mind and Rethink websites on “harm OCD,” which is something I am almost certain I have, but their response was “that’s just another name for a personality disorder” because it was related to self-harm.

The perfectly human and natural aspects and processes of coming to terms with trauma of anger, anxiousness, grief, and sadness are of course scorned if you have a personality disorder diagnosis. Psychiatry takes the human condition away. I believe the simple act of over-diagnosing trauma survivors with EUPD takes away pain of very real and legitimate human emotions. Instead, your personality is labelled as flawed for the traumatic experiences you’ve been through, often as a child, when you were unable to protect yourself, or even to understand. Severe trauma can turn life into a tiny flicker you can barely see. The wounds trauma has inflicted on you become the disconnected way you interact with the dark world around you.

Surely the role of the mental health professionals should be empathic validation. To encourage change and growth, and to challenge trauma survivors’ narrative of both themselves and the world around them. To move away from suffering. Not to make them feel bad for a “flawed personality.” CMHT obsession with EUPD for sexual abuse survivors only serves to reinforce negative self-view and the self-critical mind, reinforcing internal shame. Coupled with the stigma from society in general, it’s no wonder the suicide rate is so high.

You might just want to ask what ideas I have to fix these problems I’m highlighting — stop victim blaming and shaming. Believe people. Treat people as human beings. Not a mental health diagnosis made to suit the needs, budgets, and (supposed) skills of the CMHT. Society, and in particular mental health teams, need to stop causing trauma victims and survivors even more harm and trauma!

I am not saying that EUPD is not a real, valid diagnosis for some people. However, CMHTs need to stop using this as a generic blanket term for patients who have been sexually abused. It’s not a flawed or disordered personality to blame — it’s traumatized patients who are handed a EUPD (mis)diagnosis that then wrongly infiltrates every aspect of their future life and the stigma they face.

The reason why a (mis)diagnosis personally matters to me is that I didn’t disclose the sexual abuse until I was 20. Up until age 20, I lived the life of a lie. Keeping a massive dark secret. Threatened into silence. The life everyone else believed I had was a massive lie. Thanks to the CMHT’s refusal to change my diagnosis (despite all the evidence I’ve presented to them as to why they should) I’m still now living my life with a label for which I don’t even make the diagnostic criteria. A label stigmatizing my life so much it’s as good as my death sentence because of how badly I’m treated due to this (mis)diagnosis. It makes my existence still feel like a huge lie. I am not the person doctors or society think I am. I am not the diagnosis still in my medical file.