Last week we contributed to a BBC Wales News piece highlighting the issues with the continued use of the diagnosis of personality disorder. We stood alongside Jess Matthews as she bravely told her story recounting her horrific experience of mental health services in Wales and the invalidating treatment she received from healthcare professionals.

Jess’ story is sadly not unique. And nor is this just a problem in Wales.

As part of our diagnosis of personality disorder Truth Project campaign we’ve been capturing the stories of people across Wales and beyond, and they have strikingly similar things to say. What we are witnessing here is not a new problem, nor is it isolated to a lack of funding. It is not just the product of overworked, burnt out staff who have compassion fatigue. Although this may be true for some and something that all of us are vulnerable to, this issue runs far deeper. It has been baked into the mental health system since before it began.

In the 1400s, what we today call ‘mental illness’ was thought to be a moral issue, and people displaying unusual behaviours or signs of distress were considered to have moral failings and were thought of as criminals. From about the 1700s, attitudes to ‘mental illness’ started to change and a recognition emerged that the solution should be to provide care and treatment rather than confinement.

The line between being ‘unwell and without capacity’ and criminal accountability is something we are still navigating today. There are still many instances where the criminalisation of distress and trauma responses may not always be in the public’s interest or the best use of public resources as well as where if a trauma informed approach was initially taken such instances may have been avoided altogether.

Misunderstood, misinterpreted, undermined.

Women have long been said to be ‘vulnerable to mental illness’ because they are ‘weak’ and ‘easily influenced’. They are said to be ‘morally inferior’. That’s sexism talking there. It has meant that women’s distress is often misunderstood, misinterpreted and undermined. This has led to a lot of scientific bias and pseudo-scientific prejudice. Caroline Criado Perez’s brilliant book Invisible Women catalogues how gender bias plays out in our daily lives. The diagnosis of personality disorder is one way we see this in mental health provision.

Fast forward to the 19th century, and we see a concept called ‘hysteria’ starting to be used. Originally thought to happen only to women, hysteria was a term used to describe the mental and emotional experiences of women who were deemed to be prone to ‘mental illness’ as a result of, among other things, something termed “spontaneous uterus movement”: ‘hysteria’ comes from the Greek word ‘hystera’ meaning uterus. Concern for women’s ability to fulfil their duty to bear children, and the vulnerability of the uterus, would see women banned from many things, including some jobs, owning a bank account, and most sports.

The diagnosis of hysteria was eventually removed from use in 1980, only to be largely replaced by the diagnosis of ‘personality disorder.’ In 1988 an article in the British Journal of Psychiatry reported research showing that psychiatrists treated patients with a diagnosis of ‘personality disorder’ as more difficult and less deserving of care compared with other patients.

We’re now 40 years on from that, and as Jess recounted in her BBC Wales piece and as we hear from our Truth Project stories, little has changed.

The diagnosis of ‘personality disorder’ is disproportionately given to women. Women are 75% more likely to receive it compared to men. The vast majority of those women are white and again, there is no pathological reason for this disparity. The consequences of receiving this diagnosis have been shown to prevent women from accessing appropriate mental health support and impacts how other public services, including GP’s, engage with them.

A ‘disordered personality’?

But what even is a ‘disordered personality’? Given that there are no biomarkers to confirm a disordered personality, we are forced to rely on a list of criteria constructed to judge if someone has it or not. If you look at the lists of criteria for this ‘disorder’ you will find most of them are about relationships with others and ourselves, nervous system regulation, and our threat response.

It’s important to know that 82% of people with a diagnosis of personality disorder​ report traumatic childhood experiences. It is more helpful to think of these issues not as ones of ‘personality’, but instead as the result of relational harm, not having our relational needs met or having difficulties that make it hard to meet these needs, such as a neurodevelopmental difference.

Recent work by Dr Dan Siegel suggests that ‘personality’ is better thought of as a response or a set of patterns derived from our experiences and interactions with others and the world. When we consider things from this theoretical perspective, we are able to better see that the use of the term personality disorder causes diagnostic overshadowing of things like adversity, trauma or neurodevelopmental differences. Dan’s approach is one of hope and it reminds us that it’s never too late to heal from experiences that have harmed us and learn new ways of relating to ourselves and responding to situations and others.

If we’re going to create the conditions for people to do that then we need mental health services to come on this journey with us too. We need mental health services to take a relational and trauma informed approach.

We’ve had a lot of people reach out to us following the article sharing their stories and asking questions. If anyone else would like to share their story you can do so here.

One question we keep getting is how can I get this diagnosis removed from my records. Here is a guide to go about this (see below). If you’d like to share your successes or struggles about trying to get this diagnosis removed we’d love to hear from you – contact campaigns@platfform.org

How to get a diagnosis of Personality Disorder amended in your NHS medical records.

Read about this here.