Sophina’s story: “The Curse of EUPD”
“Would you trust those who disregard your feelings and minimise your pain? Would you trust those who told you to “speak up” but then shut you down when you tried?”
Content warning: coercive mental health treatment.
I started self-harming at 12, but was much younger when feelings of hopelessness and fatigue started and I began to struggle. My first attempt to end my life led to my GP diagnosing me with depression. I felt relieved at first to be listened to, but the anti-depressants didn’t help and it couldn’t be explained why I felt depressed.
My first admission to a mental health ward was at 16, but I was aged 20 when on an adult acute ward that I received an EUPD (Emotionally Unstable Personality Disorder) diagnosis. I stumbled upon this information after a ward round when my care plan was thrust upon me to sign. Until then it had never been mentioned.
I didn’t have an assessment for EUPD. I wasn’t asked a series of questions or asked to fill out a form or test, nor did I have the opportunity to have a meaningful conversation with the psychiatrist about my difficulties in the couple of times I’d met him. I asked staff to explain these mysterious new letters, and I was told to either Google them or wait for the consultant to return next week. I didn’t have the power to disagree or ask for a second opinion. The psychiatrist knew best, and my input was not required.
We’ve spend 15 years stuck in a system that hates people with EUPD.
At the time I did not relate to this diagnosis but I had no choice but to accept it. I felt depression was a better description for how I was feeling but this was removed and I had been branded as EUPD (also known as BPD – Borderline Personality Disorder) and with it came stigma and discrimination.
I’ve spent 15 years stuck in a system that hates people with EUPD. I’ve been told to ask for help but when I do, I am met with remarks that I am selfish, dramatic, a liar, a drain on the system and not worth medical treatment. They twist my intelligence into being manipulative, my anger as inappropriate, and my distress becomes attention-seeking. I have been bullied, threatened, coerced and gaslit by staff.
It didn’t take long for the self-stigma to grow and I believed I was all the nasty things they told me. I began to despise myself and I became increasingly hopeless and wanted to die even more desperately. I have cried myself to sleep at night because I feel hated by the system. Mental health services seem to have little respect and compassion for the population it’s supposed to be serving.
I’ve been told I have issues trusting professionals. But they don’t consider that it is the healthcare professionals that can be seen as untrustworthy. Would you trust those who disregard your feelings and minimise your pain? Would you trust those who told you to “speak up” but then shut you down when you tried? Would you trust those who had your friends suffer and die under their ‘care’?
I didn’t relate to my EUPD diagnosis. I felt low all the time; my soul hurt.
Before I came into contact with services I did not have “trust issues”. I had to learn that in order to protect myself I cannot trust a person just because they tell me that I should or ‘professionals’ to see through their promises to help me, especially when quite often they are not even kind to me.
Services do not want to acknowledge that they could possibly be part of the issue, or that there is a toxic culture at the root of it. Instead, they blame the vulnerable people who use the services often discharging them for “not wanting to recover”.
In a psychiatric paradox being too trusting and being not trusting enough are both symptoms of different ‘personality disorders’ – there is a very narrow margin in which someone can be just the right amount of trusting, and to fall slightly too far either end would make you ‘disordered’.
Once diagnosed with EUPD instead of being listened to about my difficulties I was told what these were by healthcare ‘professionals’ that recited the criteria for EUPD. I didn’t relate to the EUPD diagnosis. I felt low and depressed for long periods of time, if not all the time and my soul hurt, yet I was being told I had brief but intense ups and downs, inappropriate anger and relationship difficulties.
Mine and my family’s protests were ignored. The psychiatrist was all-knowing.
Mine and my family’s protests that this didn’t ring true were ignored. My own experiences and understanding of my distress were irrelevant, whereas the psychiatrist I had just met and a diagnostic manual (which is better described as a judgement on social norms than based on science) were all-knowing and far superior to me.
I feel I was branded as EUPD because I’d been known to services for a long time and not gotten better and could slot into the EUPD stereotype: young, attractive, white female, who is covered in self-inflicted scars and wants to die but doesn’t give a good enough justification as to why. I felt the diagnosis was a way of justifying why I wasn’t improving and acquitting services from the responsibility. The message being that my distress is just ‘bad behaviour’.
However, it’s much more likely that I hadn’t gotten better because I’d never received any psychological treatment that lasted more than a few sessions whilst not heavily sedated and because medications aren’t always as helpful as the pharmaceutical companies advertise them to be.
I did do an inpatient DBT (Dialectical Behavioural Therapy, a form of talking therapy) programme but found it shaming and punitive: I was locked in a room and taught the correct way to behave and react, if the staff felt I wasn’t complying then I would lose my privileges. During those months there was little space to discuss and acknowledge why I had chosen those maladaptive coping mechanisms in the first place and what purpose they were serving.
My diagnosis is a curse. Accessing healthcare becomes a battle.
The wards taught me to be impulsive, the shaming and belittling in the system led to unstable self-image, being let down made me distrustful, the trauma I’ve been left with causes me to detach from reality and the infuriating injustice of the system and watching my friends die by neglect fuelled the rage. I now feel I meet the criteria for EUPD but only because of the challenges I’ve had to face through trying to get my needs met.
For me, EUPD is a curse. It follows me around like a bad smell. Even when I try to access healthcare for my physical health it becomes a battle when they see those letters, they make assumptions and I am often dismissed.
After 15 years of being shamed, blamed and bullied by the system, my problems have understandably gotten worse and I now have a catalogue of trauma that weighs me down. I can only hope that one day the EUPD curse put upon me will be rescinded.
Speak your truth: your own experiences can help create change
If you want to share your experiences around this diagnosis you can take part in Platfform’s Truth Project.
Platfform are campaigning for a review of the use of the diagnosis of PD. Add your voice to our call for change by sharing your story. We will share these with Welsh Government and use them to strengthen our campaign.
If you are in a mental health crisis, please read this paragraph
If you have been affected by anything in this story and would like to talk to someone you can call Samaritans on 116 123. You can also call the national mental health support line for advice on 111 (press 2.)