Naming the Pain: The Power and Problem of Diagnosis

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A diagnosis can feel like a key — unlocking understanding and access to help — or like a label that locks you into something you can’t escape.

I was 35 when a psychiatrist gave me a diagnosis of borderline personality disorder (BPD)/ Emotionally Unstable Personality Disorder (EUPD). I am now 43, and I still have an ambivalent relationship with the diagnosis.

I was diagnosed with depression and anxiety aged 18 and have had various forms of treatments. I have taken several different antidepressants.

In terms of therapy, there has been intermittent support when it has got to crisis level, like CBT and counselling around self-esteem and anxiety.

I am now in a position where I can afford private therapy, which has allowed me to identify that childhood trauma is the reason for my behaviours, thoughts and unhelpful coping mechanisms, the most significant event being the suicide of a parent.

I am open about my diagnosis of depression and anxiety in my personal and professional life but not about my diagnosis of BPD/ EUPD. The only people who are aware are my wife, mother and sister. This is, I think, due to internalised stigma and a fear of reaction. It has made me a guarded person who finds it difficult to make and keep friendships.  

My past experiences inspired my undertaking of a Social Sciences degree, as I wanted to understand the reasons for social inequality and discrimination, and my successive jobs as a Support Worker, Work Coach and Benefits Caseworker.

I like to write; in a perfect world, I would make a living from writing full-time.

EUPD is perhaps the most stigmatised mental health diagnosis. Conversations around mental health are becoming more common and there is a wider understanding of the long-term impact of trauma and adverse childhood experiences. As my therapy makes me realise how much stigma I feel, it is the right time to discuss how we talk about diagnosis and add my voice to the conversation.

Debate about diagnosis sits at the heart of mental health discourse, between the need for validation and the risk of stigma. Below, I discuss the pros and cons of diagnosis, which drift towards focusing on the cons due to my own experience, not to say it will be the same for everyone.

The Case for Diagnosis

Within the clinical community, it is partly accepted that the diagnosis of BPD has limitations, particularly due to the high overlap of symptoms with other mental health conditions, such as bipolar disorder. However, it is still felt that diagnosis is overall beneficial.

A benefit of diagnosis can be validation. I felt like an outcast for so long that having a diagnosis gave a satisfying sense of relief.

Dialectical Behavioural Therapy is often the most effective treatment for EUPD. However, to access DBT through the NHS, a majority of hospital trusts require a diagnosis, or at least “strong traits” of EUPD. In these cases, having a diagnosis is essential. For some, including myself, even passing the barrier of having a diagnosis did not lead to support.         

Research has also shown that, for some, diagnosis “facilitates self-understanding, self-legitimation and self-enhancement.”

The Case Against Diagnosis

Attitudes in society to people with a diagnosis of EUPD remain predominantly negative; those with EUPD are seen as dramatic, or worse, dangerous.

Society tends to focus on the observable behaviours (self-harm, impulsivity) rather than on the underlying trauma and emotional pain.    

An argument against diagnosis is labelling.  

Labelling can lead to a situation where the “problem” is seen as being with the person, rather than society's failure to recognise behaviour as a coping mechanism. Research has shown that negative psychosocial impacts of diagnostic labelling (stigma, changes to self-identity, relationship strain, social or professional discrimination) are common.

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The key argument against diagnosis has to be stigma, which is both disempowering and frightening. This can be internalised, which can significantly impact an individual’s sense of self. I felt ashamed and blamed myself; I very much felt like there was something wrong with me, and it was too late to return to the manufacturer. This can be self-perpetuating and make recovery difficult.

That is not to say that diagnosis cannot be helpful: into the early 20^th century, Schizophrenia was generally seen as madness and sometimes as possession by the devil or evil spirits, and still is in some cultural settings. Medicalising the condition went some way to reducing stigma by seeing it as a treatable medical condition.       

Stigma is often formed by representations in the media.

There has never been a character with a diagnosis of EUPD in a British soap opera, despite it being diagnosed more often than schizophrenia, which has been portrayed often on tv. The soap opera Hollyoaks has perhaps had the character who has demonstrated the most significant traits of EUPD, Cleo McQueen, who has shown emotional dysregulation, impulsivity, identity disturbance, interpersonal difficulties and self-harm in the form of an eating disorder. EUPD was not explicitly mentioned.     

This lack of representation is likely to lead to false beliefs and a lack of understanding. Mentions of EUPD in the media are predominantly negative and reinforce harmful stereotypes, as it is constantly portrayed as a character flaw or moral failing.           

Given this, it is high time that representations in the media of those with EUPD change, and negative portrayals are challenged, particularly given the fact that research has shown that 54% of people say that seeing a well-known character on screen with a mental health condition has improved their understanding.

Perhaps the reason for this lack of representation is a misunderstanding of the condition, or a fear of showing an emotionally complex person. I urge those in the media to challenge this. Accurate and compassionate portrayals could shift public understanding, as they once did for schizophrenia.

What's in a name

Borderline Personality Disorder has origins in the 1930s.  Borderline was used because people with this condition were thought to be on the border between neuroses and psychosis.

As the term “borderline” was seen as archaic, and with the intention of reducing stigma, the term EUPD was introduced and is now widely used in the UK and Europe.

There is a suggestion that this term is less stigmatising; and a more accurate reflection of the condition. Personally, I still feel it has an overwhelming negative connotation, as it gives no nuance and suggests the person is permanently unstable.  

I would explain EUPD as a response to events during childhood. We learn coping strategies that continue through to adulthood, these can be unhealthy and damaging to those around us, but should not be seen as bad behaviour or attention-seeking. They should be seen as maladaptive, but protective. For example, alcohol can, in the short term, calm a chaotic mind and avoidant behaviour can avoid facing challenging emotions. 

If we understand EUPD as a response to trauma rather than a fixed disorder, diagnosis could become less about labelling and more about understanding.  

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