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“It ain’t what they call you, it’s what you answer to.”
W. C. Fields
Way back in 2009, after two psychiatric hospitalisations, I had run away to a town over an hour away and upon their local Police taking me to their Station for a Mental Health Act assessment, the Psychiatrist went through all these questions. I remember feeling like I was agreeing to and saying yes to everything and afterwards, he told me that for a diagnosis of Borderline Personality Disorder (BPD), you needed at least five out of nine symptoms and that I exhibited all nine. Afterwards, I was allowed home and when I next saw the Community Psychiatric Nurse (CPN) I had, I asked her “so are we saying it’s BPD now?” And she turned around and said: “I don’t want to put that label on you yet. No services will touch you once we say you’ve got that; people don’t recover from it…”
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Prior to that being said, I had actually been eager to be given the diagnosis because for me, it meant that not only did I know ‘what’ was wrong, but also, the fact that it had a name was reassurance that others have felt how I felt or have gone through the things I had experienced. But I think it’s safe to say that as soon as I started spotting ‘Personality Disorder’ on discharge summaries, that CPN’s caution was extremely validated and – sadly – it was completely supported by the negative response I suddenly began receiving from numerous professionals (but, in fairness, it was mainly the Police, A&E staff, and my local Crisis Team).
That poor and stigmatised and discriminatory treatment went on for around three years until 2012 when finally, a Psychiatrist advised my Community Team to look at admitting me to a specialist psychiatric unit or hospital. I think that the reason it took three years for this was because during that time there became a greater awareness and understanding of Personality Disorders and it was finally at the point where there was a recommended treatment for those with the diagnosis: Dialectical Behaviour Therapy (DBT).
So, I had an assessment for the nearest specialist Personality Disorder unit, but they refused to accept my flight risk and then even though at the assessment for the second and more distant unit, the Ward Manager and her Deputy offered me a bed, I refused to go. In the assessment, I’d learnt a lot about how strict the ward was, that you had daily Therapy sessions, and a timetable of therapeutic activities that meant a wake-up call and a light-out time! I hated the thought of the structure and having any sort of regime. However, a few weeks later, I made a suicide attempt that landed me on life support and my Mum talked with the Community Mental Health Team who arranged for me to go to the specialist hospital against my will.
Whilst, on my admission, the average length of admission was stated as being ’12 – 18 months,’ I ended up being an inpatient for almost thirty months! But, when you think about how poorly I had been and for how long, I guess it makes sense that it would take so long to recover from all of that. And that’s the point – being in that specialist hospital where the staff were specifically trained for helping and supporting someone with a diagnosis of BPD and where I was taught DBT and learnt to apply it – led me to recovery. I recognised that I had needed that diagnosis to have been able to access that specific and, ultimately, lifesaving help; so, for me, reviewing my diagnosis to be given a one that was more accurate to my current difficulties and ‘symptoms’ has felt like a positive step forwards because I have the hope that it will do the same – allow me access to specialist support that will be more beneficial.
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Before the review, multiple professionals involved in my care – including Richmond Fellowship and my GP – asked what I was hoping the Psychiatrist’s response would be. Did I want to be diagnosed with a particular illness? Was there something I would absolutely hate for them to say? And I’m actually so glad they did ask me this because it left me feeling more able and confident to have some form of realistic expectations – and I think that expectations going into any kind of appointment (but especially a mental health related one) are a hugely important aspect that should really be confronted and, if necessary, managed, before the actual appointment.
So, I explained that the diagnosis or term of ‘Psychosis’ has been thrown around a lot by professionals and it’s something which I’ve come to use because when I think of my symptoms and the experiences I’m having now, that’s the first word that comes to mind. I mean there was one instance in particular where the Crisis Team were asking why I’d done something and they said that famous line that does nothing to stem your worries: “don’t worry, we’ve heard it all before!” And I told them my reason and one of them literally said: “well that’s a new one!” And then the two looked to each other and one said, “I mean, that’s definitely a Psychotic one!” And the other replied with: “100%” So, needless to say that’s been a diagnosis or a word, at least, that’s gone through my head multiple times over the past year or so from when these kinds of symptoms first started.
The other issue that asking for my expectations brought up was the one thing I really didn’t want to happen or to be said; that I still had Borderline Personality Disorder. I said numerous times to the various people who asked me, that if this comment was made then I’d be asking for a second opinion and likely, walking out! I mean, I’ve read up on the diagnostic criteria for what is now called Emotionally Unstable Personality Disorder and I literally have none of the symptoms – I mean yes, the difficulty with moods and safety, but these are a direct result of what everyone has deemed as symptoms of Psychosis. Back when I agreed with the BPD diagnosis, my erratic moods and self-harm or suicide attempts were typically linked to memories of the abuse or other outside influences that would spin me out of control but, if faced by someone else; they wouldn’t be phased. Whereas now, I’d like to think that if anyone had the thoughts and experiences I have, they’d be struggling in some way.
My expectations around the diagnosis also meant that whilst a lot of professionals are using the term ‘Psychosis’ or ‘Psychotic,’ if the Psychiatrist said he thought I had a specific diagnosis and could point out all the similarities to the symptoms typical of that and to the ones I was experiencing, I’d be 100% open to it! I don’t want to have Psychosis, I want to know what is wrong because I believe that only in knowing that, can I be properly helped and supported in managing it better or recovering from it. My current CPN – not the one who made those comments about BPD all those years ago! – has said that she doesn’t typically work with people with a type of Psychosis, so I’d likely get a new CPN or Team. And I think that’s evidence in itself of what I’ve been saying about specialist help and specific support, and it also makes me wonder if that’s why I’m yet to find her really helpful because I totally recognise the effort that she’s putting to helping me, it’s just not quite useful or beneficial in any way.
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So, my CPN led me into the room where I was greeted by a very tall Psychiatrist who honestly had the most warm and friendly face that I’ve ever seen in a mental health professional! And, as if that wasn’t already a good start(!) he said he wanted to begin by asking me about my blog! Now, I don’t know if this was because he’d really thoroughly read my notes and seen that I’ve said a few times that I find it helpful talking about my blog or my pets because I feel like it builds a bit of a connection to then feel comfortable talking about the deeper, more intense things. Or was he just awesome like that?! To be honest, I got the genuine impression that he was just awesome(!) because he added that he loves hearing about service users using writing as a coping mechanism. So, he asked me why I find it beneficial, and I explained I feel it’s therapeutic because I think it allows me to get everything out of my head and onto the screen and then out into the world. It feels like it’s not totally my burden any more. Like I’ve freed myself from it.
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After the bit about I’m NOT Disordered, the Psychiatrist asked me about my expectations and how I envisioned the appointment going and what I wanted to come from it so I just said everything I’ve just talked about earlier in this post. Then, for the following hour, we went through a number of other bits and pieces he’d mostly taken from reading my notes, and since I can’t remember their order, I thought I’d just list them and write a bit about what I remember from each one…
“So, when did all the new symptoms start?
Weirdly enough, like, even though I was going to an appointment to be given a name to all the new symptoms I’m experiencing, I didn’t think about the Psychiatrist actually asking when they’d began or how they had started! When really, these are two very basic and essential questions! So, I explained I felt I could track them back to the days just before I was last sectioned (February 2023) and he said that had been his understanding too. And I know this probably sounds like an incredibly small type of validation, but to have done so not long after meeting, was something I really appreciated and which I found so helpful.
60
The Psychiatrist said that apart from my admission to the specialist hospital and two after that, he struggled to appreciate just how many there had been. So, I told him about when I had appealed the section of the 1983 Mental Health Act I’d be detained under at the specialist hospital, the CPN I’d had who’d gotten me the bed there came to vouch for the fact that if I was discharged there were no opportunities back home to do DBT. She also – to illustrate just how unsafe I had been – said that my records showed I’d had over 60 admissions to both psychiatric and medical hospitals from the time of things starting in 2009 to then (2012). Of course, upon hearing that the Review Committee had declined my application and actually advised that my section being changed to one that was more long-term!
After explaining the bit about 60, the Psychiatrist said to my CPN “ah, that makes sense; wasn’t I saying to you there’d been a mention of sixty somewhere?” Then, he said the second more incredible thing in that appointment: “I think we should scrub that out of your notes because it gives people the wrong impression…” and then he actually asked if I was ok with him doing that! I told my Mum about this bit, and she was saying how amazing that was and that it sounded like he was such a good Psychiatrist. I totally agreed… I mean, to be honest when he first asked about taking the figure out, I momentarily had the thought that in a way, I liked it being there because I felt it illustrated just how far I’ve come since then. But like I said, it was just momentarily because I could see how it does send the wrong message and I feel more strongly about that than I do about keeping it purely in the hope people will see it as progress too.
A medication change
Another typical set of questions that I didn’t think about prior to the actual appointment, were about my appetite and sleep. I told the Psychiatrist that my appetite is ok, but that my sleep is really poor because I can get to sleep, but I wake up literally three or four times per hour and even though I get back to sleep quickly, it’s still leaving me feeling extremely tired no matter how long I actually sleep for! He asked if I take my antipsychotic medication at night and when I told him that’s where it’s prescribed in my dosette box, he said that he would never prescribe it that way because some of the side effects make it a bit of a stimulant. So, he has said that I need to start taking it in the mornings.
Now, in the past, professionals deciding on or suggesting or recommending any sort of change in my medication that I haven’t asked for or thought that I needed; has literally always massively spun me out of control! So, for the Psychiatrist to have said all of this and for me to have agreed even without feeling like I had to think about it or consider whether I agreed or was actually willing to do it; I feel that speaks absolute volumes about him. It really illustrates just how trustworthy I thought him to be and that’s even more major when you think how soon I felt that way considering I had just met him too! After agreeing, he and my CPN were talking about how to do that from taking a dose at night to then needing to take it in the morning and how much time to leave between them and things and I really couldn’t grasp their eventual (!), so the Psychiatrist wrote it all out for me to take home. Again, a small gesture that took such little amount of time and effort, but it meant so much to me.
Deep bits about the symptoms
Finally, a predictable bit that I had actually thought about before the appointment – questions asking for more details on my symptoms! Now, this is actually a difficult one to write about because I’m still so cautious and anxious about telling people exactly what the strange thoughts and beliefs I’m experiencing are. I mean, in the beginning of it all – when I wasn’t having many and they weren’t often – I would type them all into the ‘Notes’ app on my phone, and at one point, I sent the list to my Mum to give her a better idea of what I was going through and why professionals were making the decisions they were with my care e.g. being told I don’t have capacity to refuse treatment in A&E.
Now that the thoughts are almost constant every day, I’m struggling to write them all up, but the list has still massively grown, I haven’t shown my Mum it though. But it’s not just about people… Like, I’ve even struggled telling Doctors and Nurses in hospital though. The way I’ve gotten through that is by recognising that if I don’t explain why I’ve done something, they’ll make their assumptions and judgments, and I’d much rather they judged me for what’s actually happening than for something they’ve just guessed at.
I’ve also struggled to tell the Crisis Team, the Psychiatric Liaison Team (PLT), and other mental health professionals because of similar instances to that which I mentioned before; where the staff have told me not to ‘worry’ about telling them because they’ve “heard it all before.” I don’t think they get it… That even if they have heard these things before; I haven’t! And I feel like whether they’re right or wrong, neither way is good for you… If you say something and they say they’ve heard it from others, it can seem as though your experiences are being belittled by being told that others have them too. And if they’re wrong and you say something they haven’t heard, you’re left feeling alone and scared. I completely get that this stereotypical comment is usually with good intentions and as an attempt to reassure you and encourage you to speak up because if you do so, they should be better placed to help you with it. I mean, can they really efficiently and effectively help you with something they know nothing about?
So, I’d like to think that if you guys know just how difficult it is for me to tell people the strange thoughts and beliefs I’ve been experiencing, you’ll appreciate that it’s absolutely nothing against you guys as my readers… I think I struggle to be open about them so much because I’m typically being asked about them when I no longer believe them or have them in my head and once they’ve gone; I look back at them with embarrassment and disbelief. Almost like, how could I have been so stupid to have believed something that far-fetched and to such a degree that I might have put my safety in jeopardy? And because things are so strange and far-fetched, I really genuinely worry that if I tell someone, then the validity and truth of them all will be doubted or questioned.
So, I did eventually tell the Psychiatrist in this appointment about the largest, strange thought or belief that has been consistent in being at the forefront of my mind and which has been a huge factor in my safety levels decreasing recently. And he was asking if anything helped with it and I said that my CPN has tried loads of different things, so she spoke up and told the Psychiatrist all these different techniques and their proper, clinical names and said, “but she always finds a way to get around things, like she manages to pick holes in everything I say.” And I was really glad she was there for that bit because I think it meant more for him to have a professional say these different methods rather than me be like “nothing helps.”
Talking about that led me to also adding that DBT coping skills don’t work either. That I’ll try my favourites like Mindfulness, Distraction, and Self-Soothe, but they do nothing. It’s almost like these weird thoughts and things are above and beyond something like that changing them. Like they’re too good to be beaten by something as ‘simple’ as DBT! I explained how this makes me feel frustrated too because when DBT worked with the Personality Disorder stuff; it made me feel like I had more control over things. Like, I wasn’t exactly ‘causing’ things, but I did have a level of power over managing and coping with those things. I can’t do that here. And I’m a bit of a self-confessed ‘control freak’ so that element of things is really important to me.
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At the end of the appointment, the Psychiatrist had said he wanted to schedule one or two more appointments with me before giving his final diagnosis and then he asked if I had any questions. So, I asked that even though he wasn’t saying what it is yet, was he prepared to rule out me having a Personality Disorder still, and his reply? “We can definitely say you’ve recovered from the Personality Disorder!” And I got kind of emotional – which, whenever I’ve told people they’ve all said, “of course you would be!” – for so many reasons!
I mean, the BPD diagnosis has obviously been such an enormous part of my life for around fifteen years, and it was the inspiration behind the title of I’m NOT Disordered! And I know it might sound silly but actually, one of my first thoughts in hearing the professionals would agree that I’ve officially recovered from it, was ‘do I need to change the name of my blog?!’ It’s kind of ironic to think about the fact that I named my blog based on the mindset that BPD wasn’t me. That it wasn’t – and shouldn’t – be seen as the definition of me. That it’s not all there is to me. Yet now that it’s no longer my diagnosis, I actually feel like a piece of me has gone(!) and I’m actually left wondering ‘who am I without BPD?’
Thinking on since then though, I’ve come to the conclusion that the element that had me questioning things the most, were the thoughts surrounding I’m NOT Disordered, and I realised that it’s my blog which I’m not ready to give up. And yes, it started with a ton of inspiration taken from BPD, but ultimately it is whatever I say it is. Ultimately, this blog is about my mental health journey – and that can and absolutely will, continue whether it involves BPD or not! Plus, I’d like to think that I’ve always been about recognising the importance of not denying or ignoring your past. Even if it’s traumatic. Even if it’s the worst thing in the world. It made you who you are today. And that’s what I’m trying to think about; that I wouldn’t be where I am without having gone through BPD but not because of BPD; because of how I have proven that CPN wrong. Because of how I have coped with it and then recovered from it. My fight is what has made me into me.
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So, the plan moving forwards is that I’ll continue to see my CPN until my next appointment with her and the Psychiatrist at the end of May and he thinks that he’ll come to a decision as to my new diagnosis either in that appointment or the one after it. I was worried that telling people what he’s said about being recovered from BPD, but then saying I’m getting a new diagnosis is a bit of a… Like it’s kind of celebratory, but then saying there’ll be a new one might seem to put a dampener on things. I’d like to think though, that after reading what I said about why diagnosis is important to me, will encourage people to see that this entire appointment was positive – that it’s equally good that I’ve recovered from BPD as it is good that I’ll have a new, more accurate diagnosis.
When I was on the phone to one of my Support Workers from Richmond Fellowship today (11th April) and telling her about the appointment, I had a new thought: if I can recover from a Disorder where I was told people don’t get better from it, then I can take on whatever is to come too!
