Warning: this is a long and rambling post.
Ever since my most recent visit to see General Psychiatrist, I’ve been bothered by what happened at the appointment. It was almost 4 weeks ago (27 days to be precise), and it’s been something I’ve thought and puzzled about for most of that time. 4 weeks is a long time to sit on my fat arse doing nothing about it, I know. To a certain extent, that’s been deliberate – I wanted to be sure my initial emotional reactions had settled down – but it’s also because thinking and writing about this whole thing is something I’ve been finding very difficult. It is, I’ve decided, time to grasp the nettle, however. To be honest, I’m not sure how much sense this post will make if you know nothing about the appointment itself – you can read my initial account of it here, which was written in the heat of my initial emotional reactions.
I guess my overwhelming feeling about the whole experience now is one of humiliation. I felt belittled and patronised by what the General said, and how he said it. The things I had told the General about in that appointment, and the one that preceded it, I had never told, in their entirety, to anyone. It was a big deal for me to be so open. I think in this blog I tend to come across as self-confident, and sarcastic, and articulate, but I’m really not like that at all in real life. This persona I’ve created and given a name to – Aethelread – although he shares the same experiences and opinions and attitudes as me, isn’t really me, for all that. He’s like me on those rare occasions when I’m at the top of my game and feeling great, but for most of the time I’m quiet, and withdrawn, and almost painfully inhibited, especially when it comes to talking about things like this.
Quite apart from anything else, it’s just embarrassing to sit under the staring eyes of a virtual stranger and own up in the cold light of day to things you know are more-or-less batshit crazy. Psychiatric appointments are probably my least favourite experience in my life, ever. I mean that quite seriously. They’re embarrassing, and threatening, and infuriating, and socially awkward (why does he try to pretend like he’s my friend, for god’s sake?) and just awful. I turn into a stammering, inarticulate idiot. I become incapable of sitting still. I fidget with my hands, and my knees twitch, and my voice shakes with the effort of forcing anything out into the open. I can’t make eye contact, I look at my hands, at the door, at the clock, at the skirting board, at anything. Sometimes I manage to pretend that I’m making eye contact by looking, not directly into his eyes, but at the epicanthic fold at the corner of one or other of his eyes.
It’s because of all of this that being told that I wasn’t mentally ill really was devastating.
I’m not sure he actually meant it. After he’d told me, he asked a lot of questions about how I manage my depression, and told me with a big, beaming smile that I was ‘doing all the right things about that’, so I’m pretty certain he thinks I have depression. He also told me that ‘you have that thing where you feel very anxious in social situations – you obviously get that a lot’. So, all in all, it was pretty clear to me that what he meant was that I don’t have an exciting mental illness. I just plug along with depression and anxiety. There’s nothing ‘glamorous’ in my mentalism, like schizophrenia, or bipolar disorder. (I know that in real life there’s nothing glamorous or cool or exciting about those illnesses – they’re just a different way to experience misery – but I’m talking about the impression I got from General Psychiatrist here, not my own attitudes and opinions.)
This was one of the things I found most humiliating – the implied assertion that, because I didn’t have a ‘sexy’ mental illness, I couldn’t be mentally ill, or at least, not mentally ill enough to be worth bothering with. It seems to be a common attitude amongst people who work in MH services. This is zarathustra from a little over a week ago:
My own opinion is that mental health services should always be focused on the people with severe, debilitating mental illnesses – schizophrenia, bipolar disorder, eating disorders etc.
Now, zarathustra was writing that in the context of an attempt to create controversy (and he’s been successful – 52 comments at the time I cut and pasted this excerpt), and also in the context of writing about a moderately idiotic proposal from the government to employ additional therapists to help people cope with the ‘depression’ they may feel on losing their jobs. For what it’s worth, I agree with the assertion that depression is over-diagnosed, and that feeling bad when you lose your job isn’t a symptom of disease, and that it’s unhelpful to the patient to treat it as though it is. But the underlying attitude still bothers me: if you don’t fit one of those severe labels, then how dare you waste the time of MH services?
Something else I found profoundly humiliating was the General’s patronising attitude to a lot of what I said. The most over-used phrase in the whole appointment was ‘I don’t do therapy,’ and it was wheeled out every time I showed any evidence of having thought something through for myself. So when I told him about the fact that I try to work out whether something like being spied on is true, his reply was ‘I don’t do therapy’. It had nothing to do with therapy, it had to do with me trying to tell him how I work out if I’m getting paranoid or not – in other words, it was pretty damn relevant to someone who had just, explicitly, asked me if I thought I was paranoid. But – ‘I don’t do therapy.’
It was obvious he thought of me as a therapy casualty. He tried to imply that I hadn’t ever really experienced any of the things I told him I had, but had just thought that I had under the ‘intensive pressure’ of therapy. (Personally, I’m not quite clear on the distinction between real psychosis, where you think imaginary things are real, and pretend psychosis, where you think imaginary things are real, but there you go.) He decided, despite the fact that I had told him the opposite, that I hadn’t been bothered by any of my symptoms before entering therapy, and that I was ‘one of those people who it would have been better if they’d never known.’ The implication here was that I used to skip happily about my business, exchanging pleasantries with my hallucinations, and that it’s only become a problem because my therapist said it might be, and now I’ve gone and got all anxious about it.
I’m doing a bad job of keeping my emotions out of this section aren’t I? So, in keeping with my status as a therapy casualty, let’s acknowledge them explicitly. I felt humiliated, and now, in reaction to the humiliation, I feel angry. But I don’t think either of those feelings are inappropriate. I don’t think I’m doing a bad thing by refusing to turn the feelings of humiliation and anger on myself, and criticise myself for being a bad person, for having done the things that the General seems to think I did. I think it’s ok for me not to be ok about this.
Something else I think it’s ok for me not to be ok with is the overwhelming sense I have that I’m being played games with. This is something it’s going to be very difficult for me ever to be sure about. I have a tendency towards paranoia (and, btw, when I say that, I say it in the sense that a layman does – I’m not attempting self-diagnosis), and believing that the people you interact with are deliberately hiding things from you is getting pretty close to paranoid conspiracy theory.
But I can’t just dismiss the General’s comments about my being ‘odd’ and seeing the world ‘uniquely’ and having a set of problems I will very likely struggle with for the rest of my life. Particularly that last part – how could the general say that unless he had some sense of what was causing those problems, and a sense that whatever it was, it was unlikely to ever change? When I last wrote about this, I deliberately didn’t draw any conclusions about what the General might have meant, although I did have some ideas. I wanted to leave it as open as I could, in the hopes that, if it suggested something to someone else, any responses they gave would be more objective.
As it happened, three people suggested the possibility that I might have been diagnosed with a personality disorder without being told about it. This is what I had been wondering about myself. As I said at the time, it just seems to make sense to me in terms of it being like a mental illness, but not actually a mental illness, and also incurable. I was a bit more taken aback by the suggestion, which two people made, that my ‘incurable difficulties’ could be an indication that I might have an autistic spectrum disorder.
In a sense, the precise details of what the specific issue might be don’t matter too much to me at the moment (although, clearly, they’ll become important in the future). What definitely does bother me is the suggestion that there might be something that is being kept from me. Again, of course, I have to keep aware that this is starting to shade in the direction of paranoia – but the fact that several people have interpreted things in the same way does suggest that this may not only be a figment of my imagination. And I do very strongly have the sense that I’m not being told the whole story, and have had for a while. It’s why I asked to see the original referral letter, and the extremely anxious reaction by Yvonne definitely made me wonder why the thought of me seeing my notes might be so alarming. I think the General’s assertion that I was the sort of person who is better off not knowing is also perhaps relevant: better off not knowing what?
Anyway, this is in danger of spiralling off into ‘potentially perhaps maybe could’ve been’ territory, and that’s not especially helpful, or interesting to read. Trying to bring things back to some kind of focus, I think there are really three reasons why I’m not ok with what happened at the appointment:
- the way General Psychiatrist acted and behaved;
- the fact that all attempts at diagnosis and treatment seem to have been abandoned;
- the possibility that there is something that has been decided about me that I’m not being told.
The first of these points I am, I think, going to have to just let go. I’m annoyed about that, but I can’t see any way that I can raise or tackle the issue safely. While there’s a chance, however remote, that I might have been labelled with a personality disorder, I think I need to be very careful about expressing anything that could be interpreted as emotional instability, or problems with handling interpersonal relationships. It would make it far easier for them to dismiss what I say if they can pretend that I’m just ‘acting out’ because of an imagined personal grievance. I’m going to be much harder to dismiss if I seem to be displaying a friendly, helpful, logical approach. In practical terms, I think this means I’ll need to be careful to say things like ‘I didn’t understand what General Psychiatrist meant when he said…’ rather than ‘I felt insulted when he said…’. It’s going to stick in my craw having to pretend to understand things less well than I actually do, but I think I have to do it.
There are, I think, three ways of dealing with the remaining points. One possibility would be to try and make an appointment to see General Psych, and explain the problems I have, and give him a chance to set the record straight. The problem with this is that I really don’t like the man, and, given the choice, I’d rather not spend any more time in his company. I also don’t think there’s much chance of anything coming from it. I’m pretty sure that, how ever I approach the issue, he’s going to interpret me questioning him as a personal attack.
Another possibility is to ask to see my notes. This is, if I’m honest, the approach that appeals to me most, if only because it will give me direct access to what the various people who’ve met with me actually think, without it being wrapped around with all the ‘suitable for patients to understand’ bullshit. But there are drawbacks. For example, I think it’s likely to be viewed as a hostile, or maybe even belligerent, act. That wouldn’t normally bother me – it is my legal right to see my notes, and they can take a running jump out the window if they don’t like it – but I have to bear in mind that I’m likely to be dealing with these same people for a very long time. It would almost certainly be a mistake to alienate people I’m likely to be dependent on in the future. It annoys the crap out of me that I have to think like this, but it would seem to me that I pretty much have to.
The other main drawback is that I’ve discovered that my legal rights are actually a lot less robust than I thought they were. On checking, I’ve found that all or part of my notes can be withheld if there is reason to fear that allowing me to see them constitutes a ‘serious risk to my physical or mental health’. There is, of course, no guidance as to what would be a ‘serious risk’, but, obviously, if they’ve already decided not to discuss something with me in person because it’s ‘not in my best interests’ to know, they’ll apply the same logic to the written record. I have also seen some official documents online (they relate specifically to the Trust I would be dealing with, and I’m not linking to them so as not to give away where I live) which suggest that it would be considered acceptable (or, at least, not illegal) to create fabricated replacements for documents they don’t want me to see, in order to allay any suspicions I might have that I’m not being shown all my notes. This situation seems pretty unfair to me – the people who diagnose and treat me are allowed to withhold from me the information that would enable me to discover whether or not I’m being diagnosed and treated correctly. But all of that is pretty much academic – I need to face the fact that asking to see my notes might not actually get me anywhere, and is very likely to antagonise and alienate people who’s good will I’m likely to be dependent on in the future.
This seems to leave one final option, which would be to go and see my GP and have a chat with her about what has happened. I would clearly be hoping that she would be more forthcoming, and might be willing to explain a bit more about what’s actually going on. The disadvantages to this are that, firstly, I would feel awkward taking up an appointment for something that isn’t really a medical problem, and, more importantly, there’s no guarantee that General Psychiatrist will have written to her to let her know what the situation is. Technically, I’m still under the General’s ‘care’, so my GP may well not know anything except that I have been referred to him.
In other words, there really isn’t an easy way out of this. Deciding I wasn’t ok with what happened, or with allowing things to just drift on in the way they have been, was the easy part. Deciding what to actually do about it is going to be far harder, I think.
As a final point, I have to say that all of this seems very unfair to me. Why do I have to go through all this? Why can’t I just have a straightforward, adult discussion about all the issues that there are, or seem to be? It is, pretty much, what would have happened if I’d been referred to an outpatient clinic for a physical problem, after all. There are times when I’m convinced that all of these things are power games played by the people who work in mental health just because they can. I mean, the patients are loonies – who’d ever take any of their complaints seriously?