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.