*This post includes a gifted product*
Buy What Lies Buried: https://amzn.to/3u06Pp5
Having previously collaborated (which you can read here) with Forensic Psychologist, Kerry Daynes on her first book The Dark Side of The Mind (which you can buy here) I was so excited to hear she was releasing a new book; What Lies Buried. And so I’m very honoured to have been gifted a copy of the book from Octopus Publishing and asked to write a blog post about the incredible book…
‘Personality, unlike psychosis, is not something you ‘have’ or experience. It is who you are.’
When Kerry and I first started messaging, she told me that she loved the name of I’m NOT Disordered, so reading this really shed light on why she liked it. So, since I’ve had a lot of new readers recently, I’ll explain the title: I didn’t brainstorm my blog’s name, in fact, to the contrary – it just ‘came’ to me. But that doesn’t take away the meaning behind it…
Kerry’s statement about personality being ‘who you are’ is a very accurate definition, and it is why – being given the diagnosis of Borderline Personality Disorder (BPD) – I became passionate to evidence that label is not all that I am. It shouldn’t define me and who I am. It shouldn’t be the first thing people know when they meet me. Nor the first thing someone is told when talking about me. So I wanted my blog’s title to reflect those feelings.
When I was first diagnosed with BPD in 2009, the diagnostic criteria was that a person had to exhibit or experience at least five of nine ‘symptoms.’ In my BPD assessment, it was decided that I had all nine. Me being me, I look on the bright side of everything so the positive I found in this, was that when I was admitted to a psychiatric hospital specialising in Personality Disorders, I could identify with all of the other inpatients. Where some expressed conflicting symptoms, and made the ward volatile and intimidating, I felt like a bit of a peacekeeper!
After the diagnosis assessment, I remember saying to my Community. Psychiatric Nurse (CPN) “so is that official now? That’s my diagnosis?” And she told me that she was very wary of ‘sticking that label’ to me because “it’s a death sentence. Services know people with BPD can’t get better so you’ll get no help.” I mean, as if I wasn’t already feeling hopeless?! And sadly, it gave me a terrible first impression of the Disorder; yet I was still surprised when my CPN proved correct and professionals began labelling me an attention seeker and sometimes just point-blank refusing to even see me because they thought my difficulties weren’t genuine.
With mental health services having that attitude with me for around one or two years, their mistreatment finally had one of the biggest, most dangerous impacts – it led to a suicide attempt which ended with me being on life support in Intensive Care. Because of that stigma around BPD, I almost lost my life and yes, at the time… well my last words when an Anaesthetist said they were putting me to sleep were “I hope something goes wrong and I die anyway.” Needless to say, that at the time when I came out of the coma, I wasn’t aware of how lucky I’d been. I didn’t believe that the psychiatric professionals who’d ignored me and dismissed my struggling were lucky too – because if I’d died as a result of their poor care, it’d be them who were questioned when it came to finger-pointing time.
Again, looking on the bright side though, that attempt was the drive my Community Team had needed to recognise the real risk I posed to myself and that gave them grounds to have me sectioned under the 1983 Mental Health Act and taken to a specialist psychiatric hospital over 100 miles away from home. And in doing that, I was finally given the recommended treatment for BPD – Dialectical Behaviour Therapy (DBT) and through that, and new medications, I finally found that light at the end of the tunnel!
Thing is, it shouldn’t have taken me almost dying for the professionals to sit up and recognise my risk and admit that their attitude and responses was – in fact – making things worse. So, a huge motivation for me in my blogging is to educate more people about BPD in the hope that no one else is treat that way; because one time, someone might really die as a result.
‘… being grilled on the finer points of someone’s inner mental workings, when another professional with very similar training to mine has come up with markedly different interpretations…’
Whilst being admitted to the specialist hospital helped, it was so challenging to adjust to the new attitude and responses from the more specifically trained staff who had such a better understanding of BPD. It’s sad that this wasn’t the ‘norm’ – having effective help and support no matter what your diagnosis – but it was definitely the way things were.
It was strange and unnerving to go through such a dramatic change because I had become almost ‘used’ to the fact that if I was to self-harm, there’d be absolutely no attention paid to it – or at the very least, a comment that it was ‘superficial,’ and I’d continue feeling the exact same way. In the hospital though, if I was to self-harm, it’d be a trip to the medical hospital escorted by the psychiatric staff, and then a search of my bedroom to uncover any sharps, an increase in medication, and more intensive levels of observation! In a way, that response was more helpful because it provided me with more motivation not to do it because I wouldn’t want my room searched and I didn’t enjoy sitting in A&E for stitches or having staff assigned to sitting in my bedroom doorway with the condition that I be within ‘eyesight’ at all times!
However, even within the hospital there were occasionally discrepancies between staff’s responses. One instance in particular was when I was hallucinating rabbits and there was one member of staff who agreed to search my room for all of them, put them in a net, and take them outside. And oh my God did that help! I’d spent years back home having professionals completely doubt the existence of my hallucinations, and doing that, didn’t take the voices or rabbits away! But this staff member catching them in a net and throwing them outside was the most powerful relief I had ever experienced around the hallucinations.
Then the member of staff was in the staff office and we (the inpatients) could hear them all arguing from the corridor! One Nurse was telling the staff who’d helped that she shouldn’t have responded in that way because it was ‘playing into’ the hallucinations. I guess the concern was, why would I believe the staff telling me those things weren’t real when one person was validating them? So, I think there needs to be a balance between acknowledging and accepting what someone is describing or experiencing as being real for them, but also teaching them that it isn’t real for anyone else.
Hearing the staff argue like that left me feeling really terrible because I felt 100% to blame for the entire situation. And that actually made me angry with myself and led me to be reluctant to ask for help or even confide in staff anything to do with the hallucinations at fear of causing another argument. But, in the end, I recognised that the disagreement was actually a good opportunity for me to explain to the staff exactly what was helpful and why. And that was really the start of me becoming more aware and connected to my mental health which has come to grant me great insight into what I really need from psychiatric services and professionals. And actually, from life in general!
‘Studies have shown that over 75 per cent of those diagnosed with BPD were subjected to abuse as children.’
Firstly, I chose this quote because I wanted to make potential readers of the book aware that within What Lies Buried, Kerry has added in a lot of factual information. And I recognise that might not be everyone’s cup of tea… But, personally, I love that she’s done this because I think it really brings richness to the book and leads it to be more educational in addition to entertaining.
This statistic in particular, stood out to me for very obvious reasons – I can identify to both aspects; I do have BPD and I was abused.
When I was diagnosed with BPD, I didn’t know of anyone with the same diagnosis. This inevitably left me feeling completely alone, and that also led to feelings of hopelessness because it meant that I had never heard of someone recovering from BPD. Ironically though, those feelings led to me being admitted to psychiatric hospitals and in there, I met other service users and inpatients with the same diagnosis as me. In a way, this was useful because I felt a stronger sense of empathy in being amongst people who have similar experiences to me. But then that was also saddening because I couldn’t stand the thought of someone feeling even remotely similar to how I have.
This conflicting attitude was pretty much identical to the one around abuse, in that it’s reassuring to know I’m not alone, but I still wish no one has experienced something that horrific. Learning that there were others out there who’d been abused was also helpful in arguing with my thoughts around how I was completely to blame for the abuse. Knowing of others made me realise that I would never say that they were at fault… so why should I be any different? You know? It’s like that thing about considering the advice you’d give someone in your situation and then taking that for yourself. I mean, let’s be honest; who is actually any good at taking their own advice?!
The fact that so many people with BPD have had experiences of abuse doesn’t surprise me to be honest… To me, it’s like saying everyone with Post-Traumatic Stress Disorder (PTSD) has gone through a trauma – of course they have! Like, there has to be something causing thoughts, feelings, and behaviours. People don’t self-harm or attempt suicide for no reason and people don’t have something like BPD for no reason.
To be honest, being told by numerous professionals that the abuse I’d experienced was – in one way or another – a direct cause for all of my mental health difficulties, my self-harm, and my suicide attempts, I was overwhelmed with anger (yes, it’s a ‘symptom’ of BPD!). I was furious with the person who had abused me because whilst he was arrested and the ‘accusation’ will remain on his records, he doesn’t seem any worse off since it happened… To the contrary in fact because he was given a promotion in the position of power he’d used to hurt me! And so I was angry that my whole life had been turned upside down and inside out when I’d done nothing wrong; and yet he – who is for all intents and purposes guilty – is just continuing with life as though it didn’t happen. It was extremely invalidating because it was as though something which had such an enormous impact on my life, actually didn’t mean a thing to him. What he’d done to me, meant nothing – which was likely because he continued doing it to other girls!
‘… my rationale being that it was better to have had the discussion and not needed it than to have needed it and not had it.’
So this quote made me think about the dramas around my antipsychotic medication over the last few years... I had a new Psychiatrist who had this attitude that people with a diagnosis of BPD shouldn’t be on medication. Apparently research studies have shown that the service user receives no benefits in the long-term and so the recommended treatment is around talking therapies and DBT etc. Fortunately, my Mum was with me when she made the research studies comment because she spoke up and pointed out that I wasn’t included in those studies so why should I be treat based on them?!
Obviously, the Psychiatrist agreed to prescribe the medication and things went well until my old pharmacy made a completely life-changing error and stopped requesting the repeat prescriptions from my GP. Since my medication comes in a dosette tray, I was oblivious to the error until the hallucinations began to return and I experienced the withdrawal symptoms from not having the medication reduced before stopping it.
Of course, the Pharmacy pointed fingers at everyone other than their own staff but because the GP hadn’t stopped it, they agreed to put me straight back on, but it’s not that simple… like most medications, my antipsychotic was going to take 4 – 6 weeks to be back to the right level in my system and unfortunately, even then it wasn’t powerful enough to stop me from self-harming so severely that I severed the branches of the Radial Nerve and needed surgery (for the first time in my entire history of self-harming). And upon recognising this serious risk to my safety, the professionals agreed to increase the antipsychotic which, after two weeks, has literally gotten rid of all my hallucinations entirely.
So this quote made me think of the thought process that surely it was better to prescribe the medication to see if it did work rather than refuse to in either the hope that things get better anyway or the belief that if they were prescribed they wouldn’t work?!
‘’We’re all mad here,’ I said quoting Alice in Wonderland, because I had long ago rejected the notion that there is a separate group of people who are ‘mentally ill.’’
This quote, left me thinking about the us vs them area of mental health – which is primarily about service users and the professionals treating, caring, supporting, and helping them (or doing the exact opposite!). (Also I really love Alice in Wonderland!)
From the very beginning of my mental ill health, I was aware of the us vs them culture in psychiatric services. This was mainly because I was immediately sectioned after my first suicide attempt and it was almost automatically and instantly explained to me that this would give the medical staff permission to restrain me. So from the offset I got the distinct impression that in mental health, things were done to you and not with you.
It didn’t take long for the decisions the professionals were making around my care often felt like punishments. It wasn’t just about being restrained, sedated, and put in a seclusion room; in the specialist psychiatric hospital I was in for over two years, the staff were huge fans of ‘consequences’ and taking ‘responsibility.’ But their actual actions around this felt a lot more like pointing the finger, passing the blame, and punishments. There were numerous times when inpatients (including me) had self-harmed in their bedrooms and rather than talk it through and see what they could to help, staff would move you to a completely empty room! And having all of these… consequences(?) sometimes solidified the distinctive impression that there were the psychiatric service users on one side, and the professionals on the other.
I really hope my comments have intrigued you enough to buy the book: https://amzn.to/3u06Pp5