Hallucinations & therapy: An update

Regular readers of this blog will know that from time to time I experience a few unusual mental events, like thinking I can hear voices when there’s no-one around to talk, and getting frightened/ suspicious of things that either don’t exist, or that I have no reason to worry about.  I’ve kicked back and forward the idea of mentioning this to Yvonne, who I’m seeing once a week for psychodynamic psychotherapy, more or less since I started seeing her.  On the one hand, I knew I should mention it – if somebody else was experiencing what I was experiencing that’s definitely what I’d advise them to do.  On the other hand, I really didn’t want to, partly because talking about it is difficult, and partly because I wasn’t sure I wanted my permanent medical records to include references to more severe MH difficulties.

In any case, the whole shall I/ shan’t I thing was, I realised, getting incredibly stressful.  I’d reached a kind of stasis about it, which is a thing that happens to me sometimes, although usually with more minor decisions, like whether I can ‘risk’ the caffeine in a normal cup of tea, or if I should go for the caffeine free Rooibos stuff.  The stress was starting to have a bad effect on me.  It had become the main reason why I wasn’t keeping up my usual frequency of postings here.  Events that normally make me slightly stressed were gradually becoming impossible because my background level of stress was so high that any additional extra on top was becoming unsustainable.  (My stress levels are also up at the moment because I’m waiting for the DWP to get back to me about my re-assessment for Incapacity Benefit – 4 weeks since I sent off the form now, and still no response…)

Eventually I realised the only way out of the predicament was to jump one way or the other on the issue, and decide once-and-for-all whether or not I would tell.  Then I realised that if I chose not to tell it would still be possible for me to tell in the future, and so jumping that way wouldn’t actually solve anything.  So it had become pretty clear that really there was only one thing to do.  I had to tell her, so I did.

Yvonne took the news quite well (bear in mind I was initially sent to her just to tackle social anxiety), and asked the kind of questions I expected her to ask: do the voices ever tell you what to do? How often do you hear them?  What do they talk to you about?  Are there things you do to try and stop them talking to you?  How do you know they’re not real?  (Actually, that last one took me off guard, although the answer’s obvious enough – because I’m on my own when I hear them.)

She did express a certain amount of surprise that I hadn’t mentioned this to anyone else before, and also that no-one had picked up on it for themselves, but that’s because I can be a very convincing liar when I choose.  I can (and have) looked psychiatrists straight in the eye and said, “No, I never hear voices” and had them believe me.  Yvonne didn’t seem inclined to think that was possible, but then again, I’ve looked her straight in the eye and told her that I’ve never had any suicidal feelings, and that’s not true either.  For what it’s worth, I don’t actually think this ability is a good thing.  If people were able to tell I was lying I wouldn’t have had to go through the stress of working out whether to ‘own up’ to my voices or not.  That said, a small part of me does take some pleasure in knowing how easy it is to fool people who sometimes seem to think that their training makes them infallible.

Since the Big Reveal things have moved pretty fast.  Yvonne said that she wasn’t worried enough about anything I’d said to feel that it required immediate action, but that she did want to speak to a General Psychiatrist (as opposed, presumably, to a Colonel Psychiatrist…) for guidance on how to proceed.  She said that it was likely they would want to arrange a meeting to assess me, and perhaps to discuss the possibility of medication.

For those of you who are interested in the rules of demarcation between nurses and doctors – I know it’s an area of interest for a lot of folk on Mental Nurse – she went out of her way to stress that she wasn’t diagnosing me with anything, and that it would be a psychiatrist, or my GP, who decided if there was any significance in what I’d mentioned.  All she would do is pass the information on, although she did mention that, based on other people she had worked with who had various diagnoses, she thought I might be “on the edge of several different things”.  What that means god only knows, but it does sound fairly ominous…

Anyway, it has since turned out that ‘talking to a psychiatrist for guidance’ doesn’t mean, as I had assumed, a brief conversation of which, possibly, a written record might be made.  No, it means a formal letter of referral fired out in several thousand directions at once, including a copy to my GP, but, strangely, not to me.  If I want sight of it I apparently have to make a formal Freedom of Information request.  I am, to put it mildly, not happy about this.

Really there are two issues here.  One is that I’m not allowed to see the referral letter.  I know for a fact that some NHS Trusts automatically cc letters to patients, so it irritates the bejesus out of me that there are so many obstacles being put in my way.  Yvonne, to be fair, tells me that there is nothing in the letter that we hadn’t discussed, and that if it were up to her she would be very happy to show me the letter, but that Procedures put in place by The System prevent her.  I mean, for fuck’s sake, it’s like they’re trying to make me paranoid.

The second issue is really more profound.  I have a fairly hard time trusting people in MH services.  In real life I tend to be very trusting, but that natural approach seems to desert me as soon as I walk into a building with the words ‘psychiatry’, ‘psychology’ or ‘mental health services’ written above the door.  For all my flippancy above, this is the real reason I have fought shy of telling anyone official about what I’m going through.  It has been a very gradual, slow, and painful process for me to get to the stage where I felt I trusted Yvonne enough to be able to tell her.  Now I feel like that trust has been betrayed.

One of the things I discussed at length with Yvonne before I got round to spilling the beans was that, if I did open up to her, I had a significant fear that things would suddenly accelerate and that control would be taken away from me.  She did her best to reassure me, but it now turns out I was right to be worried.  I’ll freely concede that the business with getting access to the letter isn’t Yvonne’s fault.  What is her fault is that the letter exists in the first place.

I had not given my permission for anything to be put in writing, and certainly not for it to be sent to half the population of the whole city.  (I’m exaggerating, it was only sent to 2 people, but given the various administrators, secretaries etc who’ll have the letter pass through their hands, this is what it feels like.)  Now, it may well be that my permission wasn’t required – I certainly don’t know the ins-and-outs of the legal situation – but that’s not really what’s relevant.

Yvonne was the person I had trusted most in all my years of contact with MH services.  All she would have needed to do to keep that trust is to have told me that she would be writing to a general psychiatrist, and that the letter would be copied to my GP.  For some reason she didn’t do that simple, simple thing, and that’s a problem.  If somebody I really felt was interested in building a trusting relationship with me, someone I really felt was ‘on my side’, will violate my trust so casually, what hope is there that I’ll ever be able to trust any of the rest of them again?

What makes this so particularly stupid is that the whole process relies on me being able to trust the people that are working with me.  I find it incredibly hard to open up in the context of MH services.  If I feel in the least way scared, or threatened, or uncertain, I won’t be able to do it.  This isn’t a question of me being childish and saying, “Well because they didn’t do something the way I wanted them to, I’m going to stop cooperating, and that’ll show them!”  I know that would mean I was cutting off my nose to spite my face.

What I mean is that I literally won’t be able to do it.  I’ll end up admitting to all the things I told Yvonne (they’re in writing, I don’t have a choice), but putting a really positive spin on them.  “Oh, yeah, it happened once, about five years ago, but I’ve never felt anything like that since…”  It’s not that I’ll want to do that, it’s just that I’ll go into crisis mode, and end up doing whatever I can to get things back to ‘normal’ as fast as I can.  It’s what I always do whenever I feel like I’m under threat.  I can’t help it.

I want to end this post with an appeal to people who work in MH services.  I think there are a few of you who are kind enough to read my blog from time to time.  Please, for the love of whatever it is you hold sacred, make sure you tell your patients (or clients, or service users, or whatever you’re calling us this week) everything that you’re going to do.  Things may be standard procedure for you, but they’re not for us.  You may listen to people talking about their mental weirdness for eight hours a day, every day, but for us it’s an exceptional – perhaps a once-in-a-lifetime – thing.  Please try to realise that the slightest thing can put us off our stride, can make us start to question everything, can force us back inside our shells.  And that matters, because when we’re thinking that way we can’t tell you the things you need to know, and the whole process becomes a gigantic waste of time.

Anyway, lecture over.  I’ll keep you posted on developments.

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This entry was posted in About me, General mental weirdness, Hearing voices, Psychiatry, Psychology, Social Anxiety, The NHS. Bookmark the permalink.

15 Responses to Hallucinations & therapy: An update

  1. la says:

    As a reader, I’m glad.

  2. Cellar_Door says:

    Ouch. I know it’s easy for me to say, but I do make a point of being as explicit as possible about things I need to do with any information I’m given. She should have made it clear to you.

    First though, I do think it’s positive that you have told someone about the voices, given the concern the issue has been causing you. I’m not always in favour of full disclosure as you know, but speaking as a mental health person it does help to have a fuller picture when trying to decide on treatment.

    However, as this was something that you wished to remain confidential, she really should have respected that; nurses have a legal duty to pass on any disclosures that demonstrate risk to others, but in your case I would have not considered your voices evidenced risk (based on what you’ve said about them). She obviously felt this was something that went beyond her capabilities, but given that you clearly aren’t an immediate danger to yourself or others, she really should have sought further (more informal and anonymous) advice from her supervisor if she was struggling with keeping your confidentiality. Possibly you could have negotiated if/when she would pass on the info; if the voices became more distressing, for example.

    But I’m just a student, so all of the above might be bollocks!

    Anyway, it’s completely understandable to be angry and upset by this, but it would be a shame if her mistake destroyed a previously good relationship; what she is doing is out of concern for your wellbeing, as cackhanded as it has been done. Definitely explain to her why you are upset though, so she can learn from it…

    Hope all that makes sense anyway…

    Take care x

  3. Silvawingz says:

    I think it sucks A.
    There is no excuse for what she did. She was highly unprofessional. She should have made it perfectly clear right from the start where her professional boundaries were. She should also have told you what she was going to do so that you fully understood. I think you have grounds for a formal complaint.

  4. Silvawingz says:

    Also I should have told you before – NEVER tell them about voices – it gets them all excited and you in all sorts of trouble……….believe me I know!

  5. cb says:

    That does sound bad for you. I agree with CD that being clear with what will happen is the important thing. I also find it really difficult to understand why you aren’t copied into any correspondence about you. I thought that was a standard.

  6. aethelreadtheunread says:

    Thanks for the replies.

    la – i presume your gladness relates to the fact that i have spoken up about my assorted weirdnesses. Thank you for your opinion, which is a whole lot more objective than mine is right now, and therefore very useful. But i’m afraid i’m still struggling to be glad about it myself just now.

    Cellar_Door – i’m afraid it’s not a question of if the events i described (i wouldn’t class them as a mistake – i would guess she had a good idea what she was up to) have affected the relationship. They have irrevocably destroyed it.

    The issue of passing on the info later doesn’t really apply as we are in the last couple of weeks of therapy. As far as i can tell, Yvonne would agree with you about the voices not ‘evidencing risk’ – hence the reason she decided no immediate action was neccesary. I suspect her motivation for passing on the info at double-quick speed was a concern that, once my time with her is over, there is a danger i will disengage from MH services. It’s a shame she didn’t consider the possibility that her actions would make me disengage faster and harder than any inaction possibly could have.

    Re your point about her basic motivation being a concern for my wellbeing. I expect that was in there somewhere, but it was overlaid with a healthy dose of wanting to cover her own arse (who’d want to be ‘the nurse who didn’t tell’ when i’m found brandishing a knife in the middle of a shopping centre and saying “the voices made me do it”?). I’d also guess that, thanks to the ongoing turf war between nurses and doctors, there was a fairly hefty desire to rub the psychiatrist’s nose in it too – see, us nurses are way better at taking patient histories than you incompetent doctors.

    I know i shouldn’t be surprised by any of this. They’re basic human motivations – the desire to shrug off responsibility, the desire to brag about one’s own abilities. A lot of the anger i feel at the moment is actually aimed at myself for being so stupid as to allow myself to be so comprehensively suckered.

    Sorry, Cellar_Door, i’ve sounded very bitter and angry in responding to your comment. It’s not aimed at you, i’m just angry and bitter at everything at the moment. Don’t worry, i’ll get over it in time. :o)

    silvawingz – thanks for your anger on my behalf, and i’m sorry that you’ve already had problems in this line yourself. Oh, and btw, you did warn me not to tell, back when i originally raised the possibility – https://aethelreadtheunread.wordpress.com/2008/07/18/on-hearing-voices-and-other-ephemera/#comment-276 I guess i should have listened to you!

    cb – thanks for your empathy. It’d certainly be nice if it was standard.

    Sorry, everyone, for the anger in this reply. I’ve tried re-drafting a couple of times, but i just don’t seem to be able to get it out of the words – i think i did better in the main post. But rest assured, it’s not aimed at any of you lovely people. :o)

  7. Cellar_Door says:

    A – don’t worry, your anger is justified and I don’t feel got at :0)

    You know the nurse and are obviously much better placed to get an idea of her motivations. I tend to play devil’s advocate a lot in these situations, just because it’s how I am, but nurses like her do make me angry. She has fucked up something that had been positive for you and I’m sorry for that. There can be a lot of power play between professions and it irritates the hell out of me. Likewise with the ass covering – it takes someone very strong and very confident to do what is actually right and not what they think will potentially look best in the newspapers, although the blame culture that believes a risk assesment can predict when a mental is going to blow their nose is a huge part of this.

    Try not to be angry at yourself. Trusting someone with such personal information makes you intensely vulnerable, and you are to be commended for being able to do it. It shows great strength. The fault is with her, not you.

    Hugs x

  8. la says:

    >>i presume your gladness relates to the fact that i have spoken up about my assorted weirdnesses.

    Yes, sorry for being so abrupt. When I posted, I only had six words left and I needed one spare in case the phone rang so I could say “Hello?” (In hypothetical situations, I always answer the phone.)

    I focused on what I thought was the “good” part of this blog: telling a MH prof about the voices. Hopefully, it will lead to effective treatment but, if nothing else, it takes the burden off you *and* us. (Not that you’re a burden but it puts the problem into their hands now. Hope I’m making sense.)

    Sorry I haven’t commented on the rest of the blog but my mind is too muddled up right now to really take it in. I can understand why you’re unhappy but I don’t have any words of wisdom or advice.

    *offers chocolate digestive instead*

  9. bippidee says:

    I kepts stum about the voices and hallucinations for 20 years. After that length of time I was more concerned that they would think i was a big fat liar. But as a result of the referral, i have finally been honest with a pdoc and i feel so relieved by it. At last i am on meds which may actually work. Ok, so my records now mention psychosis and i know that may work against me if i ever have kids (doubtful) but, like you, the stress of not disclosing was making me worse.
    I agree that the nurse should have been more open about procedures and can understand why you are angry with her, but I would imagine she simply made the mistake of assuming you would know she meant a referral. As you say, to her it was a fairly routine decision. She couldn’t have kept it between the two of you, in case you ever went on a spree down your local high street with a machete lol.
    btw, if the benefits people check how you are with your doctor, this could actually help you. So there is a good side to hearing voices afterall!
    take care

  10. Jesus, what a circus. The woman needs a wallop with a cluebat, fast.

  11. aethelreadtheunread says:

    Thanks for all the extra comments.

    cellar_door – I’m glad you didn’t feel like i was getting at you. :o) As the only representative of MH professionals who’s commenting on this i was a bit worried that you might do. You were right to point out “the other side of the story”, as my anger and bitterness (which has receded a lot over the last day-and-a-bit) was making me believe the worst possible interpretation of everything. I’m slowly coming round to the idea that it might have been more of a cock-up than anything more malicious.

    la – don’t worry about leaving brief comments, i understand putting things into words can be very difficult sometimes. I’m sorry things aren’t going great for you at the moment, and i hope they get a bit better soon. Sorry that it seemed like i was putting a burden on you and my other readers by writing about stuff i hadn’t told the professionals – that wasn’t my intention at all. :o)

    bippidee – 20 years, wow, that makes my couple of years look seriously unimpressive. lol :o) Glad that things have worked out well for you – i’m sure they will for me too.

    DeeDee Ramona – Thank you for commenting, and also for teaching me a new word – cluebat – which i’ve just googled. I love it – it’s what you use to batter someone who doesn’t have a clue. Excellent! :o)

  12. Cellar_Door says:

    Hi A…You sound happier, which is good :o) Anger and bitterness are crappy-feeling emotions…it’s possible to get rid of them and yet still appreciate that you have been done wrong by, but hopefully without the crappy-feeling.

    You don’t have to worry about offending me anyway, I know the system has some flaws (hah!) and I don’t take offence when people rant about it…I just hope I don’t do anything too wrong to end up being ranted about one day… :o)

  13. Mandy says:

    Trusting MH professionals. I think that is difficult because it is a professional relationship (certainly on their part). They have rules and regulations to stick to… You can trust someone in their professional cpacity but that is different from trusting them with sensitive information (as in privy to yourself, or things you would share with close friends). Its all about boundaries, I guess. And sometimes people with illness are still working with theirs when they come into contact with MH staff. It is a learning curve. Some professionals and patients strike a good balance, some professionals flex a bit in order to have a trusting relationship that works for the patient. Others are jobs worths.

    Granted professionals should have the honesty to say what they are obliged by the rules and regulations to do (and what they are going to do) and to make that clear.

    As for having access to your own information…I have heard stories where people have been denied information about themselves whilst ‘patient confidentiality’ is being quoted at them. Just whose confidentiality is it?

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