Tag Archives: Schizophrenia Spectrum Disorders

A Provocation for the Declaration Festival

Tonight (technically last night, since it’s about 1am) I gave a provocation at the Declaration Festival. It was for the closing event, responding to Article 24 of the Universal Declaration of Human Rights (the right to rest and leisure). I was delighted to be part of it, particularly to be in the company of Jenny Lindsay and Harry Giles and their excellent, deeply personal responses to the topic. 

My own response was likewise personal. Unsurprisingly, I came at it from the mental health angle. This is the text…

 

Hi. I’m Jen. You might already know that. I’m never sure how much you know.

 

Thanks for coming. Not that you had a choice, but still… thank you.

 

I hope you like the weather. I chose it specially. I thought it would be a good introduction to my mood, you know? A bit grey. Frosty. Kind of a foreshadowing thing.

 

It’s really nice to see everyone here today. What’s even nicer is that I’m pretty sure that most of you are real. You look real.

 

Except you. You, not so much. I’m not sure whether I’m hallucinating you or not, and it’s not really polite for me to ask complete strangers whether they’re real or not. Normally I wouldn’t call attention to you, just in case you are a hallucination and everyone thinks I’m crazy for interacting with someone who isn’t there. I’d wait until someone else has demonstrated that you’re real to them before I said or did anything involving you. It’s a bit convoluted, I know – the easiest way to establish your reality would be to touch you, but there are two problems with that. First, if you’re not real then this entire room full of people would see me waving my hand through empty air. Second, if you are real then – wait, actually, it’s three problems. Because the second problem would be that I’d just started pawing at a stranger for no apparent reason, and the third would be that while we were in physical contact you might be able to read my thoughts.

 

That’s why I’ll avoid shaking anybody’s hand if I can. You seem like very nice people, and I’ve no doubt your hands are clean and everything, but I’m sure you’ll understand that I don’t really like letting people read my mind until I get to know them a bit better. It makes job interviews and networking sessions a bit of a bitch. Especially when people don’t employ me or don’t reply to me, because then I wonder whether it’s because they saw something in my mind that they didn’t like. I wouldn’t blame them. There’s a lot in there that I don’t like. And here’s an interesting thing – I’ve never succeeded in getting work from someone whose initial greeting involved a kiss on the cheek. I hate cheek-kissing. If touching my hand gives you access to my thoughts, kissing my cheek is like plunging head-first into them. So I’ll keep my distance and run the risk that you’ll think I’m stand-offish. I get that a lot. Stand-offish, reserved, arrogant, bitchy… I just don’t want to let you into my head, that’s all. I’m sorry. It’s not meant as a slight.

 

And now I’m noticing that all of these people are staring at me and that means I’ve been concentrating on you for far too long, trying to figure out whether you’re real. That suggests that you’re not and that I’ve been looking at an empty chair for all this time. So they think I’m weird already. And it’s not that they’re wrong – I’m well aware that normal people don’t have these kind of hallucinations – but I would rather they got to know the professional side of me first. The functioning side. And now they haven’t. Again.

 

The worst thing is that it didn’t have to be this way. I’m in control of this situation, after all. This entire room is part of my story, it’s a construct made in my own mind, so in theory I could turn it into anything I like. Surely, if everything here is the product of my will, I could have manifested a scenario in which I walk into the room and you all automatically think I’m amazing? I could have dreamt up people who have been waiting their whole lives to hear public speaking skills like mine. Why would I imagine a situation where people look at me with long faces, or sneakily check their phones while I’m talking, or think I’m crazy just because I sometimes see things that aren’t there?

 

Oh. I’m sorry. I’m so sorry, you look like you’re having a terrible time. Is it just to do with this? Or is it something bigger? If I’ve imagined you, if I’ve made you exist, have I given you an existence that’s that bad? I’ve done that before, and I feel pretty guilty about it. So if I have… If I have then I’m really sorry, but I don’t know what to do about it. The easiest thing, the usual thing, is for me to steer clear of other people. If I can manage my environment, it’s easier to tell when things are real. It limits the possibilities, but not in a bad way. Just in a way that makes life more manageable. Less exhausting.

 

Because that’s what this is. Exhausting. Every time I’ve been in treatment, when I’ve explained the experience of this lovely combination of schizotypal ideas of reference, magical thinking and good old ADD, that’s what my various therapists and head-shrinkers have said. “That must be exhausting.” Every time. And they’re right.

 

They’re right.

 

This is my punishment, my penance, the price I pay for bringing you into existence and making you miserable. The price of inhibited dopamine uptake, deficient serotonin production, of a genetic quirk that triggered an intermittent madness in me. A mind that never stops tormenting me for the real and imagined things I’ve done. A brain I can’t trust, can’t ever turn my back on. A reality in which I can never, ever… rest.

 

And that’s why I’ll always struggle with Article 24, the Right to Rest and Leisure. For someone like me, with a mind like mine, the management never stops. No amount of recognition or legislation will ever be able to force me to let up on myself. The coping mechanisms have to be constant, otherwise they won’t exist at all.

 

But because of that, I appreciate everything that leaves me with only this battle to fight. The wider the recognition of the right to rest and leisure, the more I feel like I have breathing space. Time to myself, time to hide from the world and focus on quieting the noise in my head. Knowing this to be my right makes me feel better when I see the judgemental faces that my brain conjures up looking at me as if I’m lazy or workshy or seeking attention.

 

Are they judgmental, these faces? Your faces? Are the expressions I see on them real? Are the faces themselves real?

 

I don’t know, and I don’t think I’ll ever have enough energy to reach a conclusive answer.

 

All I know is this.

 

I’m tired.

 

And I need to rest.


When a belief is not a belief

There will be a lot of things in this post that I’ve touched on in the past, but I’ve never explained the full extent of what’s been going on in my head over the past year.

I’ve mentioned before that it was the 10th anniversary of my mum’s death in October and will be the 10th anniversary of my dad’s in July next year. I’ve written at length about my experiences with depression and a wee bit about ADD and PTSD. I know I have a tag for Schizotypal Personality Disorder so I must have spoken about it somewhere, but I’ve never really gone into it in depth because it’s less well-known and harder to explain. But it’s a factor in what’s going on at the moment (or at least it seems to be), so… here goes. I don’t claim to be an expert on this. I’m just someone who lives with it, and I’ll try to explain what it is, what it feels like and how it’s affecting me as clearly as I can.

Schizotypal Personality Disorder is a schizophrenia spectrum disorder. It involves obsessive rumination, anhedonia, eccentric behaviour, inappropriate emotional responses, magical thinking, social withdrawal and anxiety, strange means of expression and occasional hallucinations. I remember the psychiatrist who diagnosed me, back when I was 18, explaining that as someone with StPD I would never see the simple solution to a problem if there was a complicated one available. Apparently the big difference between StPD and schizophrenia is that with StPD, you can still tell when what you’re experiencing is not reality.

Over the years I have learned how to live with and control my symptoms. Getting the obsessive rumination under control was a huge personal triumph, achieved through CBT and visualisation and relentless discipline. My means of expression changed gradually, influenced by years of blogging. By writing for an audience and reading other people’s writing, I got the hang of how other people sound. I gradually let go of my unusual patterns and word choices (though a few little things remain – read enough of my writing or listen to me talk and you might spot my obsession with patterns of three). I learned how to tell delusions and hallucinations from reality – most of the time, at least.

The difficulty – and this is the really tricky thing to explain – is that sometimes I find myself in situations where I don’t believe my beliefs. Ten years ago, when my parents died, they were the only people I truly cared about. (Failing to form close relationships outwith your immediate family is a fairly typical StPD thing.) Those events planted the seed of a rather unhelpful idea – specifically, that the people I love that much will die. That my love can bring about the death of whoever receives it. The basis for this belief seems to be that if my life were a fictional narrative, that’s what I would expect to happen next.

Now, on the one hand, I am well aware that this cannot be the case. The world just doesn’t work that way. I do not live in a novel. What happened to my parents was statistically improbable, but that makes me the victim of a misfortune, not deus ex machina or a particular stage of my journey as protagonist. My love is not some kind of deadly force.

On the other, I know it is true. I’m talking about the kind of absolute certainty with which I know my name, or that the face I see in the mirror belongs to me. It is this knowledge that makes me feel so bloody guilty about loving my husband, because if I know that my love will cause his death. So I feel guilty and selfish for putting him in danger, and I live every day with the fear that my belief will prove accurate. Every time I come home I experience intense anxiety from the moment I arrive at  our building to the moment when I am actually in the flat and have seen for myself that he’s still here, still alive, not imaginary. This is not rational or reasonable. I should be able to leave the house without becoming convinced that something bad will happen to my husband. I should be able to unlock my front door without my heart pounding in my ears. I talk myself through the rational argument every time. Usually, delusions respond to repeated dissuasion and a certain amount of CBT. This one, however, is very strong and extremely resistant to everything I throw at it. It has not diminished over time. If anything, it has grown stronger.

That’s  a big part of the reason why I’ve been so antisocial this year. I’ve skipped so many get-togethers because I just can’t manage the usual social anxiety on top of this. I’ve always been a little bit freaked out by large groups, but usually I’ve enjoyed hanging out with people on a one to one basis. Not so much this year. This year I’ve been a lot more withdrawn because my head is too noisy, and also because as this belief gathers strength, it seems safest for everyone if I don’t let myself feel too close to people.

That’s a tough one to explain to people. “Sorry, I can’t meet because I’m really busy just now” is a much easier excuse to understand than “sorry, I’m worried that being friends with me will cause you harm so I’m just not doing the interaction thing right now”. I try to explain verbally when I have the energy, but honestly, talking this through takes a lot out of me and it’s easier just to write about it and hope that the message gets through.

The reason it takes so much out of me is that I fear people’s judgement. I know there will be people who look at this and think “well, you know that belief is nonsense, why don’t you just stop giving in to it?”, missing the fact that I don’t give in to it. I fight it every single day, I win minor victories every time I succeed in doing what I want and need to do without letting this stop me – but I haven’t won the decisive battle that gets it out of my life forever yet, and that’s not for want of trying. I also know that there will be people who write me off as completely crazy because I have a schizophrenia spectrum disorder and they don’t know enough about what that means to realise that they’re not unsafe around me. And I know there will be a few who think this is just attention seeking. It’s not. Even I am not masochistic enough to want the kind of attention that anything involving the “schizo” prefix gets you.

I’m writing this partly as explanation for why my 2013 has been quieter and less sociable than previous years, and partly because I’ve shied away from talking about anything explicitly StPD-related here in the past. I write about my mental health because I feel that if someone like me can’t be “out” about it, what chance is there for people working in less accepting worlds than the arts? Avoiding the issue of StPD was beginning to feel like a betrayal of that purpose, and an act of cowardice.

So there you go. A bit of insight into my head and hopefully into StPD as an everyday thing. I don’t feel like I’ve given you an accurate picture of how powerful and terrifying these beliefs can be, but I don’t know whether I can. I’ve been searching for the words for a very long time, and finally it felt like I should just get this much down and see whether the more minute, intense stuff follows later.

Hopefully some of this makes sense to people who are not me.