Tag Archives: Schizotypal

March 7, 2016

A Provocation for the Declaration Festival

By jenbitespeople

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.

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June 15, 2015

Over and Out

By jenbitespeople

 I’ve seen this article doing the rounds on social media over the weekend. For the non-clickers in our midst, it’s a piece by Sarah Hepola about binge drinking and the experience of blackouts. She describes the experience of waking up in odd places, not certain how she got there or what she had done the night before. She talks about the panic, fear and confusion the blackouts could cause, and also about the freedom that went with being drunk. It’s an interesting piece to read from my own perspective – someone who doesn’t drink and never has, but who is no stranger to blackouts. So I thought I’d write a post of my own, what with having a blog and all.

People often seem surprised when they realise that I don’t drink. I don’t make a big deal of it, this one blog post excepted. There are two situations in which it tends to come up. The first is when someone is trying to offer me a drink and seems puzzled (or in some rare cases offended) by my request for a soft drink. I’ve met people who thought I was trying to spare them the cost of buying booze, or that they were trying to get me drunk, or who thought I was somehow being shy. In that case I will reassure them that there’s no issue, I just don’t drink. The other situation is when it’s medical. How many units a week? Zero. Yes, zero. No, I don’t drink at all. Yes, I’m sure. It’s surprisingly difficult to convince a GP that you don’t drink – I saw a GP in my teens who actually accused me of being in denial about an incipient alcohol addiction and it must still be in my notes, because I get asked about it to this day.

I’ve also never taken recreational drugs, which seems to surprise people even more. Not even a single experimental puff of a joint. If I can tell you what it’s like to be on opiates or benzos, it’s because they were administered in hospital.

Now, I realise that all of this is probably making me sound like a total fucking goody two shoes. I’m not. While clubs and parties aren’t really my scene, when I do go out I am quite capable of matching my behaviour to the people around me. I’ve had friends try to take my car keys away from me, thinking I was too drunk to drive because I was so giggly and nonsensical. I can disinhibit with the best of them when I want to.

So why, if I’m not completely uptight and joyless, do I not drink? There are two reasons. First, I absolutely fucking loathe the taste of alcohol. I’ve always been willing to try new things in case I someday find something I like, but every time I take a sip I get an overwhelming hit of ethanol and it’s really, really unpleasant. People assure me that this is what it’s like for everyone and the trick is to push through it and get used to it. But I never did, probably because of my second reason, which is this: I am a control freak.

Yes, I know, plenty of control freaks drink. Not this one, though. And this is where the blackouts become key to my story. Imagine the phenomenon described in that article  – finding yourself in a place you don’t remember going, having to piece together your actions based on what people tell you and any physical evidence you may have left, like receipts and the like. Now imagine knowing that this definitely wasn’t the result of drugs or alcohol. There’s nothing you can attribute this to except possible stress.

There you have my experience. These blackouts, or dissociative episodes, or whatever you want to call them, are bloody terrifying. I had a handful during my teens. Mostly they just consisted of lost time when I was at home, or classes that seemed to skip past in minutes. The first time I became aware that something odd was going on was while I was at uni, and in the early stages of my breakdown.

I found out about it one day when I phoned my parents and they were both furious with me. I didn’t know why, but I soon learned that I had called them the night before, quite late. It was an angry, rambling phone call, during which I said things that I would never normally have said to them. They were upset, understandably, and assumed that I had taken something. I hadn’t. I was certain I hadn’t. The last thing I remembered was heading out with some friends, so I checked with them. Sure enough, I had started acting strangely and had run away from them at some point. Someone had seen me in the Students’ Union using the payphones, which must have been when I called home. Apparently I had yelled at some kids for vandalising a bush and chased them down the street. I have no idea what else I did. I have no memory of any of these things. I just woke up the next morning as if nothing had happened.

After my parents died, during that strange, hermit-like era when I was living in their house, I think I had quite a few blackouts. It’s difficult to tell for certain, because I was living alone for much of that time. I’ve always been somewhat reclusive, and apparently I’m quite good at continuing to appear functional during most blackouts. But there was certainly something going on. Things would move and rearrange themselves around the house, odd things like my car keys being deliberately positioned in the middle of the hall floor, or things arranged in specific patterns. I tried not to think too much about it and laughed it off, calling it “my poltergeist”, but it seems considerably more likely that the actions were mine, just unremembered.

There have been other incidents, some of which frightened me badly. The time when I was on sertraline for depression was particularly bad. There are gaps in my memory that I find quite distressing. There would be times when I wouldn’t just find out what I had done second-hand, I would clearly remember having done something, only to find that I hadn’t – I’d lost some time and just filled in the blanks incorrectly. I had to come off the medication and just hope for the best.

Knowing that blackouts happen to me, prompted by nothing more than stress, makes drinking or taking drugs a really frightening prospect for me. I’ve been out of control too often, and I don’t like it. I have to try to get control and maintain it, to identify why they happen and do what I can to prevent them. The idea of doing something that I know could actually bring about a blackout… nope. Absolutely not.

Do I envy the people who can have a drink or a joint and not worry about this stuff? Yes. Bizarre as it may sound, I envy people whose blackouts have a clear-cut, understandable cause, and systems in place to support them as they tackle any problems they have with that cause. I’m still floundering around trying to figure out where this overlaps with PTSD and where it doesn’t and whether there’s some root cause that I’ve blocked out. It’s confusing and frustrating, and exactly the kind of thing that sometimes makes me wish I could reach for something that would help me relax.

I’ve written versions of this post before and never put them up. Talking about this openly makes me nervous. I fear being judged for it, that people will think I’m making it up or exaggerating or that I’m just insane. As ever, I write this in the hope that if there are other people out there experiencing the same things, perhaps at an earlier stage in their journey and wondering if its just them, they might find it and know they’re not alone. And for anyone who wants to judge me, there’s plenty of material here already, so I might as well just do it. When the bridge is already on fire, no sense in worrying about an extra splash of kerosene, right?

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December 5, 2013

When a belief is not a belief

By jenbitespeople

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.

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November 18, 2012

A long and frustrated mental health post

By jenbitespeople

Creative Scotland has taken over my blog for far too long. I’m still talking about the latest twists and turns in the saga over on Twitter, but the most recent piece of [headdesk]-worthy action took place while I was caught up with the double bill. Besides, Hannah McGill has been well and truly on the case and I don’t really have anything to say that she hasn’t already covered. I doubt I’ve written my last Creative Scotland post, but there are other things I need to write about just now.

So back to one of my other major topics: The Crazy and how to live with it. It’s that time of year. The dawn simulator has been back on my bedside table for a while. Mornings are just that wee bit harder than in summer (yes, even Scottish summer). And after my last self-sabotaging battle with myself, there’s an alarm set on my phone to remind me to take my antidepressants.

I wish it were as simple as just taking the bloody things, but instead it’s a minor skirmish every time that alarm goes off.

You  see, I hate taking antidepressants. I understand why I have to. My body is physically incapable of producing, transporting and absorbing sufficient serotonin by itself. So I get it. If my body won’t do this by itself and it’s a chemical I can’t do without, medication is necessary. But I hate it.  Logically, I understand that this mental illness is a manifestation of a physical problem and that I can’t overcome it through willpower alone. But to hell with logic – the point is that I hate that this is something I can’t control without relying on drugs.

Having established that, let me make it clear that any comments suggesting that I don’t really need antidepressants and could probably just take St John’s Wort or do more exercise or find god instead will not be met with grace and gratitude. I’ve spent the past 12 years learning the hard way that I have to take these drugs. Believe me, there’s only one possible outcome to my not taking them – my mental state deteriorates to the point where I stop eating or talking and start causing myself physical harm.

Earlier this year I had to increase my dosage. The dose I was on was no longer working for me. I could feel the symptoms of depression kicking in again, so I did the sensible thing and asked my GP for a higher dose. She put me on the next dose up. I’ve been round the block often enough to know that side-effects are to be expected and that the best thing to do is just hold tight for a while and see whether they subside. When the side-effects emerged, that’s what I did.

Within a few days of starting the new dose I noticed nausea, increased anxiety and problems with my short-term memory. I persevered for six weeks to see whether these side-effects were just teething problems, but nothing changed. I can deal with the nausea – it’s not pleasant, but as long as I eat little and often and/or suck sweets or sip water, I can manage it. The memory problems were much more of an issue. I’m used to having a rather good memory, but now I find that I reach for information and what I get is fog, or that tasks and appointments are completely forgotten unless I write them down (and I don’t always have time to write them down before they’re forgotten.) That scares me. It’s really unhelpful, especially as I’m self-employed, and it’s really worrying considering that I will probably have to increase my dosage again in future and don’t know whether that will make things worse.

Knowing that short-term memory is affected by concentration and that my concentration has always been affected by increased anxiety, I went to the GP to ask if there was anything I could do to control the physical manifestations of the anxiety. I was given beta blockers, which made me so dizzy I couldn’t stand and then made me fall asleep.

As you can probably imagine, that wasn’t ideal for getting through daily life. I stopped taking the beta blockers and asked to be referred to a psychiatrist to help me find antidepressants that will keep me from being depressed and suicidal but will still leave me in a fit state to live  and work. In the meantime, I was already struggling with self-destructive behaviour patterns. I got married at the beginning of the summer and found myself caught up in a massive internal battle between my newfound happiness with my husband and the depressive part of my brain that tells me I’m not allowed to be happy and that everyone I love dies. (Yes, that is what my brain is like even when I am taking antidepressants.) In my infinite depressed wisdom I decided the drugs weren’t working so I wouldn’t bother taking them.

Well, that worked out predictably badly. My mental state deteriorated, I found myself relying more and more on the façade and increasingly scared of being around lots of people. I did a bit of self-sabotage. Then finally the sensible bit of my brain remembered that I’ve done all this before and that it might be wise to take my tablets. Just for a few days. So I went back on them and voila, the greyness started to retreat… taking my short-term memory with it and leaving anxiety and nausea in its place.

After that I began trying to work out a viable pattern. Halving the dose doesn’t give me enough to keep the depression fully at bay, but more than half lets the side-effects run riot. Taking one tablet every two days is the same as halving the dose. My next move is to re-time the alarms on my phone and try one tablet every 36 hours rather than every 24.

I also went back to the GP for something unrelated, but while I was there I asked how my referral to the psychiatric department was coming along. The GP looked in my notes. Nope, nothing there about a referral to see a psychiatrist – just some stuff about my time with the community psych nurses. Why, did I want to go back for more CBT with them?

No, I damn well didn’t. If I want to do CBT worksheets (which I don’t, because the way I learned to do CBT was much more free-flowing and didn’t rely on worksheets as if I were still in primary school) I can do that by myself. I can certainly do it with a hell of a lot less judgment than I encountered from the two community psych nurses I saw before deciding that this really wasn’t for me – all they seemed to want to do was contradict my existing diagnoses and do those bloody worksheets. (Forgive me if I don’t give much credence to their contradictions, but I’m more likely to trust an actual psychiatrist who gives a diagnosis based on considerable observation and proper assessment techniques than a psych nurse who bases it on a five minute conversation and the infallible logic and clinical analysis that says “you couldn’t possibly have had a personality disorder at 18, that’s far too young”.)

So no, there will be no more psych nurse visits for me. Perhaps there are excellent psych nurses out there, but I got burned twice in quick succession. Also, CBT is not the answer here. CBT helps me with day to day management of my mental health, but it does precisely nothing to cause my body to produce, transport and correctly absorb serotonin. It’s the drugs that do that, and it’s the drugs that are causing me problems so I need to talk to someone who, you know, knows about drugs. GPs are barely trained in psychiatric medicine, hence my request for the referral in the first place.

I explained all this to the GP who told me that she was new to the area and didn’t know what was available, but she’d find out and let me know. To her credit, she did – but her letter was deeply disheartening. Apparently my options are 1) go back to the psych nurses for more CBT worksheets, because somehow that’s going to achieve something and not just waste resources that might actually benefit someone else or 2) go to a private clinic for which details were enclosed.

I checked out the private clinic. All it offers is psychotherapy. I have found psychotherapy useful on many occasions, but this time I do not need a therapist to talk to. I need someone who can advise me about medication. A psychotherapist cannot do that. A psychologist cannot do that. Who can do that? A psychiatrist. I’m not asking to see a psychiatrist because I think they’re higher status than psych nurses or psychotherapists or because I want preferential treatment, I’m asking because they are the people qualified to do the thing I need them to do.

So realistically, my options are 1) continue with the medication and see how long it takes for me to get myself into trouble for forgetting something important or simply being paralysed with anxiety and unable to do things, 2) find a private psychiatrist and hope against hope that I find a good one first time because at their hourly rates there’s not much room for trial and error, or 3) come off the meds and see how long it takes for me to deteriorate to the point where I am hospitalized, because at least there’ll be psychiatrists in the Royal Edinburgh. That last one really scares me. So far I’ve always managed to avoid being put in hospital. Even first time round, when I absolutely couldn’t take care of myself, my parents looked after me at home. Even last time round, when I was breaking my own bones, I only ended up in general medical. It’s unknown and I’m scared of it, and it would be the ultimate confirmation that my mental health is not under my control. And the path to get there is really horrible and involves the risk that I’ll succeed in doing myself permanent or terminal damage before I succeed in finding help.

I’m not particularly keen on any of these options, but most of all I’m frustrated – not just by the lack of care available, but more than anything else by the fact that the GP doesn’t appear to know the difference between psychotherapy and psychiatry. This is one of the biggest and most exhausting obstacles that you face in dealing with the Crazy. The GP is your first port of call, and even if you can get them to believe you (easier with depression than with just about anything else, but still tricky) it’s a real struggle to get access to any help. You might be lucky and win the antidepressant Russian Roulette where the GP prescribes you whatever’s cheapest and it either works for you or it doesn’t, but if you lose, my current situation is about the best you can hope for. I don’t know where this will end and all I can do is hope I don’t lose too much along the way.

The option I choose, unsurprisingly, is to start looking for a private psychiatrist and hope I can find one who isn’t charging £300/session. I have to keep reminding myself that while the illness is forever, psych sessions are not (because, guess what, I don’t like them either – not a fan of anything that suggests I can’t deal with this entirely on my own). All I need is long enough to get advice and a new prescription. I’m very good at monitoring on my own and following up with GPs. All of this is about making that very first step. I wish it didn’t have to be the most difficult and disheartening step of all.

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July 13, 2012

Openness

By jenbitespeople

A friend who reads this blog recently asked me whether I’m concerned about the possible repercussions of writing as candidly as I do. (That might make my friend sound a bit judgemental – that’s not the case, I believe she was asking out of curiosity, not judgement, and she knows me well enough to know I’d take it that way.) The answer is ‘not really’.

Perhaps I should be, since this is a public blog on my personal site and I don’t make the slightest effort to conceal my identity. But to be honest, you won’t read anything here that I wouldn’t tell you in person, and if you asked about it I’d tell you on pretty short acquaintance. If I’m open about it in person, why not online?

There was a time when I worried about what people would think of me if they knew I had mental health problems. I would never actively conceal it, but I wasn’t as relaxed about it as I am now. For a while I stumbled through conversations making vague references to ‘illness’ and ‘being unwell’, trusting that people wouldn’t enquire further. They didn’t, but I found I wasn’t comfortable with keeping the waters muddy on purpose.

It’s difficult not to talk about it when you have these problems. I don’t mean that I spill the whole story to every passing stranger, but I’ve been dealing with it for over a decade and I’ve lost large chunks of time to the Crazy. There are gaps in my CV, my educational history and my life story due to non-functioning headspace, and if I’m getting to know someone it means that sooner or later they’ll start to notice that the chronology of my life doesn’t make much sense without context. My options are 1) redirect the conversation if it goes anywhere near the subject, 2) gloss over it by making the aforementioned vague references, or 3) tell the truth, with or without all the gory details.

I prefer the truth. I spent long enough being uncomfortable with all of this and fearing other people’s judgement. Keeping things vague only keeps people at arm’s length, and feeling that no-one knows or understands me feeds into the low moods during depressive episodes. Yes, it’s a leap of faith every time. No, I’m not always happy with the results. But on balance, it’s worth it. I can deal with the occasional bit of judgement in exchange for having other people open up in response to me.

As for whether this blog will ever hinder me professionally, I don’t know. Once again I find that I don’t really worry about it. I’m a self-employed artist and I choose to work with people who are likely to have experienced these things themselves or seen them at close quarters. The levels of judgement are reasonably low. Perhaps that wouldn’t be the case elsewhere in the industry, on the commercial side where the focus is more on business than art, but the choices I’ve made mean that I’m unlikely to find out first-hand.

More importantly, some of us have to take the chance. Talking openly about something that’s stigmatised will always put you at risk of being subject to that stigma. It’s not for everyone, but these days I’m feeling secure and supported enough to do it. I know how lucky I am to have that – there have been times in my life when I haven’t had that support and I know how much harder it makes things to be dealing with it alone. Every judgement, every bad day seems a hundred times worse. I haven’t forgotten that, and that’s why I feel the need to reach out from where I am now in the hope that it does some good. It helps me more to focus on that than to let myself go down the route of giving too much thought to what people I’ve never met or barely know think of me. If writing this costs me a job, I doubt it’s a job that would have lasted.

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June 29, 2012

Exploring the Headspace

By jenbitespeople

In my last entry I began to talk about how I ended up on the scenic route. I focused mostly on my upbringing and dead parents, but there’s another major factor that helped to put me on the long and winding path. Time for another confessional post…

My name is Jen, I am an artist and I am crazy.

I don’t mean crazy in the sense of ‘I get a bit loud at parties’, although this also happens to be true if I’m in the right mood. I mean crazy as in ‘I have lifelong mental health problems that frequently impact on both my domestic and artistic lives’.

I know some people don’t think crazy is a suitable term to use for this stuff. I happen to like it. I love the sound of the word, I love its connotations of crackled glaze, and I love that it suggests the series of hyperfocused crazes that have possessed me throughout my life. So I’ll be sticking with crazy as my preferred term when discussing my own mental illness, and if you don’t like it, well… sorry.

My current collection of labels includes Major Depressive Disorder, Seasonal Affective Disorder, Adult ADD, Schizotypal Personality Disorder and mild OCD. Apparently there’s also a bit of PTSD in there following the double whammy bereavement and a couple of car accidents. I’m not entirely sure what I think of the labels, but they help to organise the mess a bit and in a way, they’re comforting. If a label exists for the set of feeling and behaviours I describe, that means it’s Not Just Me.

I like knowing I’m not the only one, and that’s why the arts play such an important role in my life. Contrary to popular belief, I have no desire to be a special snowflake. When I find another artist’s work that resonates with me, it reassures me that there are/have been plenty of other people who think and feel like me. It makes the strange things that go on in my head feel a bit more normal. However, because I still have to live with those strange things going on in my head, I’m still compelled to express the thoughts and feelings – so I create work of my own, and the cycle goes on.

While I feel that my craziness powers my attachment to the arts and provides fuel to sustain it, that’s only true at certain points in the cycle. When the craziness is under control I can work consistently and productively. When I’m on my way into or out of depression, I ricochet between obsessive, hyperfocused work and complete inability to do anything. Once the depression has taken hold I am too busy hiding under the table (sometimes figuratively, sometimes not), sleeping all day and trying to hold my life together and pretend everything’s fine to do much actual work. I might be teeming with ideas, but I lack the capacity/self-belief to do anything with them. I  have better things to do, like staring at blank documents and hyperventilating whenever the phone rings.

Over the decade since I was first diagnosed I’ve had to learn what triggers the crazy. Missing medication, homesickness, over-committing myself, parent-related anniversaries, being too sedentary, lack of light… I’m constantly keeping an eye on these things and finding ways to keep things under control. It can be a losing battle, and it definitely has been over the past year. On the one hand I’ve been happier and more in control of my life than ever before, but things have been stormy inside my head as I try to adjust to the idea of actually being happy and deal with the memories and survivor guilt. It seems strange to say that I’ve been least functional when I’ve been at my happiest, but it’s true – being happy and being stable, it turns out, are not the same thing. Having supportive people around me helps me to deal with the unstable times, but it doesn’t make them disappear.

Knowing that carving out a conventional directing career involves relentless work, massive over-commitment and long periods away from home, I’ve gradually come to terms with being on the scenic route. It’s the only place to be for someone like me, because the conventional path doesn’t really allow for fluctuating mental states. I need to multitask, because there are times when I need to write and write and write and there are times when I thrive on the focus of directing. These tend to be seasonal, and I know which times to avoid – feasible when you’re making your own work, but not so much when you’re doing something like the Regional Theatre Young Directors’ Scheme. If you know that the straight path is a fast road to self-destruction and it’s a journey you feel you have to make, the one remaining option is the scenic route.

So what changes have I made to accommodate the craziness? Well, I ended my stint in London and moved back to Edinburgh, for a start. I grew up here and although I sometimes feel the need to escape, I get ridiculously homesick when I’m not here. I chose to run the Affectable Acting sessions and create my own work rather than seeking out jobs with other companies and promising myself that I’d do things my own way once I was established enough. In committing myself to Affectable and Tightlaced, I created a structure for myself that’s loose enough to avoid making me feel penned in (which I always rebel against) but that provides a buffer against the highs and lows of a rejection-heavy industry. In building the network I found artists who understand and can share experiences. I make sure I have plenty of time for writing and plenty of time to spend with my husband and my cat, both of whom help me to stay balanced.

It’s a start. There’s still a lot for me to work on. 2012 has been really turbulent and I’ve spent much of this year in terror of my phone and email. Yes, I know that probably sounds weird, but seriously, this is the biggest disruption the mental health stuff causes in my life. I often write emails or enter phone numbers and then stare at the screen or the phone for ages, unable to hit send or call, paralysed by the utter conviction that something disastrous will happen if I do. If I miss a call, I do the same thing with voicemail. Once I’ve missed a call or failed to call/email someone when I think I should have done, it starts a cycle of avoidance that is really difficult to break. Every day that goes by makes it harder, because the damage feels worse and the repair feels less likely, so it seems that the sensible thing is just to let the communication go. Of course this is not the sensible thing. I know that. And I know that it should be very easy just to pick up the phone or hit send. But that’s why it’s called ‘mental illness’. It’s about doing things that don’t make sense from the outside. Believe me, it makes perfect sense when I’m in those moments. I’ve CBT’d this behaviour to death and haven’t cracked it yet, but the work goes on. Someday I’ll figure out how to get this one under control, and it’ll make my personal and professional lives much easier when I do. While I search for that solution, I’ll continue finding and implementing measures to lessen the impact of this behaviour on my life and my work.

I’ve thought long and hard about whether to write this post. I’ve never kept the craziness a secret, but nor am I usually quite this open about it. People often make judgements and some of them are quite unfair and inaccurate. But you know what? That’s fine. Make whatever judgements you like. If it stops you working with me, fine – but if mentally healthy colleagues are a priority and you’re working in theatre, good luck. I think sharing this kind of thing and remembering that it’s not the end of the world, just something that might require an adjustment of expectations and priorities, is a beneficial thing. I certainly hope it is. And if nothing else, it’s a little more background in the story of how I ended up on this particular path…

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