Compass

Tag: stigma and discrimination

  • The Pecking Order of Distress

    The Pecking Order of Distress

    I keep thinking about a conversation we had earlier, dearest daughter. The one where I told you about the recent NHS survey suggesting that as many as 1 in 10 young women may have Borderline Personality Disorder (BPD).

    I’m not sure how I was expecting you to react – I think I hoped it would make you feel less alone. But your initial reaction was disbelief. You pointed out that you don’t see hordes of young women having episodes out in public — and surely you would, if there were really 10% young women out there with the condition.

    I got defensive

    I’d spent so long looking at the report, trying to understand what it was saying, how the screening for BPD worked, that you refusing to believe it felt like you were saying my article was wrong — even though I was just reporting the results.

    And I got that familiar feeling of frustration that has come from many years of me saying something and you automatically saying the opposite. Like disagreement is your reflex — even when I’m not arguing, just reporting.

    Athough, in this instance, I think you have a point. One in ten young women potentially having BPD does seem impossibly high. But even it’s an overestimate and the real number is closer to one in twelve, or one in fifteen, that’s still a huge number of people.

    Quiet suffering still counts?

    Wanting to defend the statistic, I suggested that maybe some had a different, quieter form. After all, there are many different “flavours” of BPD — not everyone explodes in public.

    You replied with your trademark bluntness: then they don’t really have a problem and shouldn’t count.

    TikTok and self-diagnosis

    You talked about TikTok and how frustrating you find it, seeing people doing posts, self-diagnosing themselves with serious mental health conditions like BPD — the “oh I get anxious and I wanted to kill myself once so I must have BPD” brigade.

    I can see why this would irritate you. The not understanding. The seeming desire to jump on a bandwagon. The undeserving taking a slice of your pie.

    But I also hate pecking orders of distress. The way people like to judge suffering and decide whether it is ‘better’ or ‘worse’ than an imaginary legion of others. It wouldn’t be so bad if these judgements were kept private, but they never are. People feel honour-bound to tell you your suffering isn’t as bad as someone else’s. You get put in your place — usually to shut you up.

    I say this because it’s definitely not just you who judges, I do it — we all do. It has been part of society since forever. Perhaps it’s worse now because of social media. I don’t know. What I do know is that it needs to stop. There has to be another way.

    A spectrum, not a tick box

    I reflected on this new way of thinking about personality disorder — how it is now to be seen as a spectrum, not a tick box. This new framework may be more accurate but I fear it will turn people’s suffering into one long pecking order of distress.

    Given that the NHS has limited resources, how will decisions be made as to whether you qualify for treatment for a personality disorder? How far down the continuum will you need to be? Will there be a magic algorithm that sifts through all the crisis team referrals and the hospitalisations and decides who is deserving? Not saying the system is any better now of course, but if the system is going to change, I’d like it to be for the better.

    TikTok and your diagnosis

    But then you talked about how TikTok was useful in your own journey to diagnosis.

    You were at college and struggling and saw all these videos where people were describing what they felt and did. They called it BPD and you thought they meant bipolar. But when you looked up bipolar specifically, you thought: this isn’t me. So you were confused, and you talked to me about it.

    I said BPD stands for Borderline Personality Disorder, not bipolar. That you having a BPD diagnosis was something I’d discussed with CAMHS a few years before, but they were reluctant to assess you at that age because emotional intensity and instability can look like ‘normal teenage’ stuff. But that maybe it was time to get you properly assessed – you were 19 at the time.

    So I found a psychiatrist privately. Things were so bad I didn’t want to wait months or possibly years to find this out. And hey presto, we’d both been correct. Or rather, the psychiatrist agreed with us. She diagnosed you as having BPD.

    Diluting the experience

    The other thing you said that gave me pause: you refused to believe the 1 in 10 statistic because if it was true, it would give people an excuse to treat it as less serious. Like the volume somehow diluted the severity of experience.

    And maybe what you were really reacting to wasn’t the statistic at all, but the risk that other people would use it against you. That they’d hear “mainstream” and translate it as: Not that bad. Not that urgent. Not worth resources.

    Bandages

    It made me think of the times we used to go to therapy after I adopted you. When we got ready for the journey home, you’d sometimes fake a fall and insist on bandages for an “injured” limb.

    Even when we all knew what you were doing, you still needed it. Because pain that can’t be seen has a habit of being doubted.

    Mental ill-health and trauma can feel brutally lonely for that reason: it’s invisible. And you found a clever way of making the invisible visible.

    You’ve fought so hard to get me — and others — to understand how serious your pain is. So I can see why anything that hints your suffering is now commonplace might feel like it’s pushing you back into being unseen.

    But what if….

    … there are hundreds of thousands of young women like you out there — suffering and not being understood?

    Maybe at the heart of this is a dialectical truth: you can be desperately unwell — and you can be one of many. Both things can be true at the same time.

    If 1 in 10 young women do have BPD, that statistic doesn’t make it trivial. It makes it very, very urgent.

  • Borderline Personality Disorder – What’s In A Name?

    Borderline Personality Disorder – What’s In A Name?

    A look at how one of the most misunderstood mental health diagnoses ended up with multiple names and why the language we use still matters.

    When I first started reading about BPD, I thought the name meant it wasn’t a very serious mental illness — that someone who had it was on the borderline of being mentally ill. Phew, I remember thinking, if that’s what my daughter has, it doesn’t sound too bad.

    It soon became clear that it was, in fact, a serious and complex condition. And the confusion deepened when I realised that it’s also called Emotionally Unstable Personality Disorder (EUPD) in some places. Other names cropped up too — Emotional Intensity Disorder, Emotional Dysregulation Disorder — leaving me wondering: Why does this one condition have so many different names? 

    A Bit of History

    The term borderline was coined in 1938 by an American psychiatrist named Adolph Stern. He used it to describe patients he believed sat on the borderline between neurosis and psychosis. 

    At that time, mental illness was largely seen as falling into one of two camps: 

    • Psychosis — where people lost touch with reality, seeing or hearing things that weren’t real and often requiring hospital care. 
    • Neurosis — conditions such as anxiety or depression, which could be treated through psychoanalysis. 

    Stern realised he had patients who didn’t fit neatly into either category. When distressed, they could temporarily lose touch with reality, but most of the time they weren’t psychotic. They were highly anxious, emotionally volatile, but often didn’t respond well to traditional psychoanalytic therapy. These were the people he described as being on the borderline. 

    How Mental Illnesses are Classified

    Agreeing on what to call diseases and symptoms has always been a challenge. The first International Classification of Diseases (ICD) was created in the 1890s to standardise how illnesses were recorded across countries. 

    Mental disorders were added in 1949, when the system came under the administration of the World Health Organization (WHO), which has managed it ever since. 

    A few years later, in 1952, the American Psychiatric Association produced its own manual — the Diagnostic and Statistical Manual of Mental Disorders (DSM) — based on the ICD’s classification of mental illness. Over time, however, the DSM evolved into its own separate system. 

    Although both systems still cross-reference one another, they now differ in the way some conditions are described and named. This is the main reason why mental illnesses can end up with multiple names.

    It’s also worth noting that while the DSM and ICD dominate psychiatric diagnosis globally, they’re not the only systems that exist. For example, China has its own manual — the Chinese Classification of Mental Disorders (CCMD). 

    A Bit More History – When Personality Disorders Entered the Picture

    As psychiatry moved away from thinking about mental illness purely in terms of psychosis and neurosis, both the ICD and the DSM introduced a new group of conditions called Personality Disorders. These described long-term patterns of behaviour and emotion that caused significant distress or difficulties in relationships and daily life.

    By the late 1960s, both manuals included a category for Emotionally Unstable Personality, but neither yet used the term borderline. Although it was being used out in the field – some influential psychiatric researchers had started repurposing this old psychoanalytic term and using it in their own work.

    Over time, the two manuals developed their own versions of the diagnosis: the DSM settled on the name Borderline Personality Disorder (BPD) in 1980, while the ICD updated its terminology in 1992 to Emotionally Unstable Personality Disorder, borderline type (EUPD).

    So What is it Currently Called in the UK?

    At the moment most UK clinicians still use the term Emotionally Unstable Personality Disorder (EUPD) but this is changing.

    The latest version of the International Classification of Diseases — ICD-11 — began rolling out internationally in 2022 and is gradually being adopted across the NHS. In this new version, the old term Emotionally Unstable Personality Disorder (EUPD) has been replaced by “Personality Disorder,” rated by severity (mild, moderate, or severe) with an optional trait description.

    This means the language in clinical notes will eventually shift from EUPD to something like:

    “Personality Disorder, moderate severity, with borderline pattern.”

    The transition to ICD-11 will take some time. It’s expected to replace ICD-10 in England over the next few years. Scotland has already begun using ICD-11 in some mental health settings, while Wales and Northern Ireland look like they are still in the planning stages.

    No Wonder It’s Confusing

    If you live in the UK, this can all feel like a right mess. If you go to your GP, they’ll probably use the term EUPD, because that’s the official language of ICD-10, still in use across most of the NHS.

    Over the next few years, as ICD-11 is implemented, this will change — most likely to simply “Personality Disorder (borderline pattern)” — though no national guidance has yet been issued.

    Meanwhile, my daughter calls it BPD, because that’s the term she sees on TikTok, where most of the content is made by American creators.

    UK charities such as Mind currently try to bridge the gap by saying:

    “Borderline personality disorder (BPD), also known as emotionally unstable personality disorder (EUPD).”

    Although this sort of description will presumably have to be updated now that the term EUPD is being phased out.

    Adding to the confusion, you might also come across terms like Emotional Intensity Disorder or Emotional Dysregulation Disorder. These aren’t official diagnoses in either the DSM or the ICD, but they’re used informally by some clinicians, advocates, and people with lived experience who feel the phrase “personality disorder” is stigmatising.

    The Problem with Personality Disorder

    For many people, the term personality disorder itself is painful. It can sound as though there’s something wrong with their core self, rather than describing how trauma, neurodiversity, or emotional dysregulation affect them. 

    The name can also carry stigma and people often report feeling judged or dismissed once that label appears in their records. 

    The Problem with Borderline

    It’s essentially a legacy label, a term that comes from a time when mental illness was understood very differently.

    When the DSM formally introduced Borderline Personality Disorder in 1980, it kept the word borderline simply because it had already been informally used for decades — and no one could agree on a better name.

    Today, it no longer refers to people being in a “borderline” state between anything. Now, clinicians use it as shorthand for a pattern of emotional and relational instability, but there’s nothing in the word itself that explains what it actually means.

    Further Reading

    If you’d like to explore more about how people feel about this diagnosis, I recommend the excellent report BPD Voices by CAPS Independent Advocacy. 

    It shares the wide range of feelings, experiences, and perspectives from people who have been diagnosed with BPD — including how they relate to (or reject) the label itself. 

    In Summary

    The story of BPD/EUPD is as much about language and culture as it is about psychiatry. 

    The name has shifted across decades, continents, and classification systems — and so has our understanding of what it means. 

    As more people with lived experience help shape the conversation, perhaps we’ll see new ways to describe this condition that are less blaming, more accurate, and more compassionate. 

    However, given that both the DSM and ICD tend to evolve slowly and conservatively I’m not expecting an official name change any time soon.

    Perhaps the best we can hope for in the short term is that a two-tier system gets created: one set of clinical terms used by professionals, and another set of names and descriptions used by people to explain their own experiences. Or will that just create even more confusion?

    Sources and Further Reading