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My story

“My physical health and my child’s physical health were put at risk because people couldn’t see past a label I’d been given.”

Author wishes to remain anonymous

I’ve struggled with my mental health since a young age and have spent time in and out of mental health units. I have a history of trauma and up until recently had undiagnosed Autism and ADHD.

From the moment I was discharged from my first CAMHS admission, my community psychiatrist seemed to be intent on putting me on a PD pathway. Fortunately, I was aware of the struggles people diagnosed with a PD faced from hearing them talk about it during my admission, so I made sure I did everything to fight against this.

I continually asked whether I had the diagnosis and my parents pushed for my ASD/ADHD assessment (that was the initial reason I’d been referred to CAMHS). A couple of years went by and I had another lengthy admission. This time I was in several units and moved across the country in adult and children wards.

When I eventually got out I unfortunately found myself in a violent relationship and fell pregnant. One day during my pregnancy, I went to the doctors to discuss my health. My doctor read out my notes and the diagnosis of “EUPD” was there. I had continually asked verbally and in writing as to whether I had this diagnosis from the age of 16. I’d apparently been diagnosed when I was 17.

I’d never had a proper assessment and I genuinely had no idea who gave me the diagnosis.

I’d never had a proper assessment and I genuinely had no idea who gave me the diagnosis. During my pregnancy, I had to attend the maternity unit for appointments regarding my physical health and the health of my baby. In my hand held notes, doctors (who were meant to be assessing my physical health) documented several times that I had “EUPD”.

There was a time where I had stomach pain and went to go and get assessed as my waters had gone early and I’d been told to make sure I got everything checked due to the risk of me giving birth prematurely. I was made out to be paranoid when I turned up and it was said to arrange a mental health assessment for me.

When I was put on the monitor I was in fact having some contractions and a doctor reviewed it and recommended I stayed the night due to my risk of preterm labour. I refused because I didn’t trust that I was going to be sectioned and taken away and I didn’t feel listened to.

The next day my community worker suggested going to a mother and baby unit to me. Thankfully my community team removed the diagnosis after it was bought up but the effect this has had will forever be with me.

I felt ashamed. I felt angry at the system.

I felt massively lied to when I found out and I felt extremely embarrassed. I had been told that I was just overthinking and basically paranoid that I had this diagnosis, only to find out I actually had it. I felt ashamed. I felt angry at the system and people involved in my “care”, but equally frustrated because I thought that if I expressed how angry I was that would only give them more reason to say I had the diagnosis.

To this day, I have disengaged with mental health services because I do not trust them. There have been times where I’ve really needed to talk to someone, but I won’t because I don’t trust anyone. I’m upset that this is how it’s turned out, when my parents asked for help for me all those years ago we were all hopeful that things would get better for me.

In fact, things have only got worse and I strongly believe that I would have been much better off had I not been in the system. This “diagnosis” (I don’t even understand how it can be a diagnosis when I had no idea I had it and was lied to about it by multiple professionals for years) has impacted my “care”. I was always aware of the stigma associated with it from seeing how friends I was in hospital with were treated.

But now I really understand. My personality was one of the only things I liked about myself, but when I found out about the diagnosis I felt like I was being told that my personality was bad and wrong.

My physical health and my child’s physical health were put at risk because people couldn’t see past a label I’d been given. I’ll never trust a professional again.

This diagnosis is costing lives.


 

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.

For more information, and to access the survey, click here.

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.)