Wales Live
For some, the diagnosis of a personality disorder can be a route to treatment and understanding.
But others have said their diagnosis has led to mistreatment and stigma.
Jessica Matthews was 21 when she was diagnosed with borderline personality disorder.
She said the diagnosis led to her being turned down for life insurance, mistreated in hospital and being treated differently.
”I’m always afraid to speak openly with people I meet because I know that as soon as they hear the words ‘personality disorder’, they’re going to start treating me differently,” she said.
Jess, from Swansea, was diagnosed while struggling with her mental health as a nursing student at university.
”I found myself doubting my abilities and that turning into a fear of failure,” she said.
Despite loving her course, she started to have panic attacks.
“It just felt like the world was caving in on top of me,” she added.
Borderline personality disorder (BPD) is a disorder of mood and how a person interacts with others. It is the most commonly recognised personality disorder.
Those with a personality disorder will differ significantly from those without in terms of how they think, perceive feelings or relate to others, according to the NHS.
After a period of going back and forward to her GP, Jess began to have suicidal thoughts.
”I really felt like the only way to stop the pain was to end my life. I felt like those around me and the world was better off without me.”
It was after this that she was put in touch with her local crisis team for a consultation.
Jess said: ”I explained what I thought was the problems like the stress of being a student nurse and fear of failing.”
But the doctor, who she had not met before, believed something else might be going on.
”They gave me a Mind booklet of personality disorders and told me to go home and pick which one I related to the most,” she said.
“If I’d picked any other personality disorder, I would have received that diagnosis instead.”
She went back for an appointment with a psychologist in the crisis team who confirmed the diagnosis of borderline personality disorder.
Initially, Jess said she was hopeful it could get her the help she needed.
“I was desperate and it felt like the diagnosis was the key to getting that support,” she said.
But this relief was short lived after she began facing stigma from those involved in her care while in hospital.
”The medical professionals withheld medication from me and ignored my distress,” she said.
”I was told regularly that I was manipulative and attention seeking and that I had no reason to be suicidal.
”They just completely invalidated me, and all of my experiences.
”I always felt like no one wanted to support me because I was that borderline patient.”
This feeling wasn’t specific to medical care – Jess also felt stigma in many other ways.
She has been denied life insurance and struggled to open up about her mental health, fearing how people will react to her.
Jess added that for some people a diagnosis is “really helpful and helps them understand themselves”.
“I hope that everyone, regardless of a diagnosis, is seen as a human being,” she said.
Mind, one of the UK’s most prominent mental health charities, has heard many similar stories to Jess’ experiences.
Rosie Weatherly, from the charity, said there is a “huge amount” of stigma that comes with a personality disorder label.
“Calling someone’s personality disordered suggests there’s something fundamentally wrong with who they are and that in itself can do harm,” she said.
”People tell us that they’re not believed when they talk about their experiences or are denied access to emergency services.”
She is keen to stress that not everyone that gets a personality disorder finds it a “disquieting experience”.
”It explains why they’ve been struggling for so long. It gives them a framework to help articulate and advocate for themselves,” she added.
Platfform are a mental health and social change charity who are currently campaigning for an urgent review of the use of Personality Disorders.
”We’ve seen in our clinical practice, experience in projects and services, as well as from people we’ve spoken to, that it can often be misused and is a diagnosis for exclusion,” said Dr Jen Daffin, a clinical psychologist with Platfform.
”The majority of people we work with have either experience of trauma and adversity in their childhood or they have differences that are being obscured by the diagnosis such as neurodiversity or a diagnosis of autism.”
Platfform are not alone in their criticisms.
In June this year, hundreds of medical professionals, including former Health Minister Sir Norman Lamb signed a letter to the health secretary asking for the diagnosis to be abandoned for children.
They point to the ”misleading and stigmatising” consequences of the label.
In October, after years of battling against her diagnosis, Jess has finally had the diagnosis removed.
She is now waiting for an autism assessment.
Jess complained about her treatment to her local health board in 2017 which has since changed names and boundaries.
Cwm Taf Morgannwg, who are now responsible for Jess’ care, said: “Jessica’s concerns about her experiences of care at Princess of Wales Hospital pre-date the establishment of our health board.
”However, we have worked closely with Jessica to learn from her experiences, as part of our commitment to continuous improvement in mental health services, both in our hospitals and in the community.”
Swansea Bay University, formerly ABMU health board, said ”Patient confidentiality prevents us from commenting on individual cases.”
The Welsh Government said: “We recently consulted on our draft Mental Health and Well-being Strategy which set out our approach over the next 10 years for trauma informed, person centred, and evidence based mental health support in Wales.”
It added that it will aim to publish its strategy later this year.
If you’ve been affected by the issues in this story, help and support is available via the Action Line