“Wisdom comes from making mistakes, having the courage to face them, and to make adjustments moving forward based upon the knowledge acquired through those experiences.”

Ken Poirot

A few months ago, I actually sent out a ton of emails to various people regarding a series I had envisioned publishing on I’m NOT Disordered for this year’s Mental Health Awareness Week (MHAW). Despite obviously receiving replies, I’ve somehow managed to reach this Week without any content! You know sometimes when it feels like time has just snuck up on you and something you’ve been planning for ages is suddenly happening? This Week is like that! So, I debated not putting any content together at all because I was struggling to think of much to write about myself with this year’s theme being ‘movement’ – hence why I’d emailed lots of people; because they were people who would have had more to say on the topic! I was still experiencing some sort of pull towards the idea of a blog post though, and I began thinking of angles on the ‘movement’ thing that might be more apt for me… I think it’s obvious that the theme is referring to exercise and the benefits that being active can have on your mental health; but I don’t have great experiences, thoughts, or feelings about exercise, so I wanted to a be bit creative and I finally decided to put a different spin on it and talk about the largest and most recent ‘move’ I’ve made for my mental health…

After over one year of thinking about it, a good few months ago, I finally began talking about my belief that I no longer match the diagnostic criteria (which you can read here – for those who are interested or curious) for Borderline Personality Disorder (BPD, but now mostly referred to as EUPD – Emotionally Unstable Personality Disorder). When I was first diagnosed in 2009, I was told that I had all nine of the possible symptoms for the Disorder (you must have at least five), but when I’ve looked at these more recently, I’ve seen that I don’t even have five anymore! In all honesty, perhaps I have three, but two of them are ones that are very vaguely reminiscent of an actual mental illness – with one of them being impulsive spending!

So, that; coupled with the new ‘symptoms’ I’ve been experiencing since last February, has led me to the conclusion that BPD or EUPD really doesn’t seem appropriate or applicable for me and my mental health now. Since I started having these new symptoms – which started with the convictions that my bones were magic and a rabbit was controlling my brain – a lot of mental health professionals have used the word Psychosis or Psychotic in describing them and so, in doing that, I’m left questioning whether there’s more to that – whether that should be being considered for a new diagnosis.

During the waiting game for an appointment with a Psychiatrist who could review my diagnosis, a number of people have asked me if I have a certain expectation or belief that I have a particular diagnosis. I’ve always tried to explain that people have mentioned Psychosis and when I think of the new symptoms that’s the sort of description that comes to mind, but if the Consultant were able to tell me another diagnosis and explain how it was relevant and well-matched for my experiences, I’d be completely open to accepting that!

At the end of my amazing appointment with the Psychiatrist – he explained at the beginning of it that it would likely be another one or two appointments before he would reach a conclusion/diagnosis – last month, he asked if I had any questions. I asked, “are we completely ruling out a Personality Disorder now?” and he said, “we can definitely say you’ve outgrown it.” Now, for a little while after it, I thought he’d said, ‘recovered from it’ (hence the title of the blog post about it, which you can read here) but when all the disagreements began, my Community Psychiatric Nurse (CPN) who had been in the appointment too, corrected me. Either way, it kind of means the same thing fundamentally in saying that the Disorder isn’t a relevant diagnosis for me anymore.

When I left the appointment, I called my Mum and the first thing I said wasn’t about the diagnosis; it was what a lovely man the Psychiatrist was! So, I think it’s understandable that when I received a copy of the letter about the appointment that was sent to my GP, I felt completely let-down and frustrated because absolutely nowhere in the three pages, was there any mention of his opinion that I’d ‘outgrown’ the diagnosis! In fact, at the beginning of the letter, he’d stated that we were having the appointment because I didn’t think it applied to me any more… So, why on earth he couldn’t have just added ‘and I agree with this’ to it; I don’t know!

He also went on to make three comments regarding things he had apparently read in my notes from the very beginning of my mental health problems (2009), but which I had never heard of and of which two were even completely false. Because of the length of the letter, I told my CPN that I didn’t want the Psychiatrist to ‘amend’ the original one because then the GP would have to read the entire thing again to find out what had changed. So, instead I asked that he write a whole new one which added his comment that I’d ‘outgrown’ the diagnosis, and three explanations as to who had made those three other notes in my records and my responses/corrections for each one.

Finally, almost one month later, I attended an appointment with my CPN, and she gave me the new letter and I was absolutely furious – like, I was shaking; that’s how furious I genuinely was! The Psychiatrist had basically taken back what he’d said to me! He made three points:

1.       He wasn’t overturning the Personality Disorder (PD) diagnosis yet.

2.       He would talk to me about symptoms of a PD in our next appointment.

3.       He would be sending the diagnostic criteria for BPD/EUPD out to me.

Firstly, he shouldn’t have said I’d outgrown it! And regarding the second point; in the previous letter, he’d listed the two things he was going to talk to me about in our next appointment and hadn’t mentioned the PD symptoms in it. To the third point, I knew the criteria; that’s the whole reason why this was all happening; because I had said it wasn’t relevant to me anymore!

I honestly felt completely betrayed in a way; like, it made me question why he’d said all he had to my face and had come across – in person – as the complete opposite sort of mental health professional than I think you’d picture or imagine and envision just from reading those letters! I think that this is made even worse when you consider that one of these new symptoms that I was already experiencing before all of this, was labelled by my CPN as persecutory thoughts and beliefs! So, I was already questioning the motives and qualities of people – not just those in my life but the general public and people who I imagined existed – and so really, the last thing I needed was for a mental health professional to really strengthen those suspicions and validate my beliefs that people were only around me to spy on me and gather information about me; because I was left convinced that the first appointment with him had been his opportunity to do all of that!

After this second letter however, I found myself reasoning a portion of blame on my CPN for the entire situation now too. After that first letter hadn’t mentioned his comment about outgrowing it, my Mum had been on the phone to my CPN and she’d confirmed that he had said that, so why on earth isn’t she speaking up for me too?! I mean, with her literally handing me that second letter, she either hadn’t read it – which would be wrong – or she had read it and hadn’t stuck up for me – which would also be wrong! Either way; I have felt completely let down by her. And this is made even more important by the fact that even though she’d been my CPN for a decent length of time now, it was only the past two months that I’d built some level of trust in her and had started to cooperate and engage more in our appointments.

In February last year, when those weird thoughts started with my bones and the rabbit controlling my brain, I voiced them to the Crisis Team, and they promptly arranged a Mental Health Act assessment and had me sectioned to a psychiatric hospital. The admission was one of the worst I’ve ever experienced – to make it easy, the most helpful aspect of it was that I was given some sedatives and sleeping tablets! So, I’d like to think that from knowing that it makes it quite understandable that I developed the belief that I’d made a ‘mistake’ when I’d told them what I was experiencing/about the new symptoms. It left me – not even reluctant; I just point-blank refused – to tell absolutely anyone (not just mental health professionals) the strange thoughts and feelings I continued to experience after my discharge from the section and the hospital because I was terrified that they’d have me sent back there!

A few months ago, though, I finally told my Mum that this was why I wasn’t willing to talk to, or cooperate and engage with, the new CPN and she made some phone calls before reassuring me that all the professionals (including my CPN and the Crisis Team) were in agreement that I shouldn’t be readmitted! So, I finally felt comfortable and able to open up and tell my CPN about my experiences and in doing so, I developed the belief that if I continued to act on the strange thoughts and refuse to tell anyone why I was doing what I was, I was more likely to be sectioned than if I sat down and just explained my behaviours and actions.

So, feeling like I’ve really only just started to build some sort of therapeutic relationship with my CPN, feeling that she hasn’t had the decency or respect to have done everything she should have in this entire situation, leaves me feeling like it’s all been a bit pointless. Like, why did I bother fighting back all these reasons and motivations for my silence to end up being treat this poorly? How was it fair that I had put so much effort in; but when it comes down to it, they don’t? How is that equal or reasonable? How is it helpful or supportive? How is it empathetic or kind and caring?

Another reason why I cried so much when I walked out of the appointment after refusing to accept and take the letter, was because I’m so fed up, drained, and exhausted from having to fight – so often – just to be treat well by mental health professionals. It shouldn’t be this hard. It shouldn’t be a battle or an argument to get effective help and support from the NHS. And, in all honesty; I think they’re damn lucky my Mum is here and that she is who she is because if she didn’t fight or help me fight so hard for my care… Well, it’s no secret I’ve felt suicidal and have made attempts before that have twice left me on life support. So, if my Mum wasn’t here, I might not have been in the ‘right’ mindset to fight for myself and with all the professionals’ errors and sheer failings… Well, I genuinely could be dead by now.

However, with me having more good moments than bad – yet the bad moments are seriously bad and unsafe! – I’m also grateful for my Mum! And I’d like to think that her courage and determination is somewhat intertwined with and influential upon my own strengths and qualities.

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