Schizoaffective or Bipolar? Does it matter???

My Psychiatrist is a Latvian fellow aged about 45. He surprised me last visit by saying "your bipolar or schizoaffective features...etc etc", as if it were a toss up betwen the two as to what diagnosis I had. Bizarrely, I felt affronted: I have always identified as Schizoaffective, especially after my worst hospital admission in 2003, whe I was 33. The chief Psychiatrist at that hospital said in my discharge meeting (with the registrar, my contact nurse and parents present) that I had a "Schizoaffective Psychosis" at that time. I was in that hospital as an involuntary patient for 7 weeks; 2 weeks in high dependancy ("the fishbowl" looks over you 24/7). So I always thought that schizoaffective was my diagnosis. So to have my present Psych (of the past 3 years) say in his Ruski-style accent that I might be Bipolar took me by surprise.

I looked up the ever-reliable (???) Wikipedia and gleaned that to be deemed schizoaffective, one must have either (a), (b), (c), or (d) features (look it up if it piques your interest) PLUS have disorganised or chaotic thoughts for four weeks or more. That's been true for me three times; each hospitalisation I've been convinced my parents are evil or that conspiracy theories abound. At my sickest I not only heard voices but hallucinated; thankfully that's only happened once (2003, aged 33). I know I've had it easy compared with some schizoaffective people.

Why does it matter what my label is? I guess I attribute a certain level of gruesome torment to psychosis (which I'm aware Bipolar people can be afflicted with too). It probably doesn't help that psychosis, or schizophrenia, has been misunderstood (eg: media reports of police shooting a psychotic person waving samurai swords) or misinterpreted (movies like "A Beautiful Mind" get some elements rights but either gloss over or get other things dreadfully wrong).

Maybe its the type of mystique that psychosis has? That people who only read or hear about it can't begin to imagine? Why do I want to be known as Schizoaffective instead of BiPolar?

Depression is almost starting to become understood (although it has a long way to go) by the wider community. BiPolar is almost nudging its way into mainstream consciousness thanks to movies and people with Bipolar who manage to contribute brilliant things to society. I said almost.....acceptance has unfortunately a long way to go yet.

However the psychotic illnesses remain cold, as far as I see. I think it freaks a lot of people out; they get scared; they imagine axes swinging and all sorts of violence and unpredictability. I know, I know.....BiPolar people endure psychosis...very real, stark and horrific/hospital involuntary stay-type of psychosis. Please don't think I am minimising what anyone with Bipolar in distress goes through; it's horrific, I've seen it in people I've been in hospital with.

Anyway look at the end of the day a label is a label. I've seen people make careers out of their label (as public speakers, authors etc). So why the fuck shouldn't I take ownership and pride in mine?

Hospital sweet hospital

Said tongue in cheek, well...mostly. While being institutionalised for feeling suicidal and/or homicidal can hardly be regarded as fun, there can be moments of levity in a psych hospital. Like the guy I used to see out in the courtyard who took to clicking his heels sideways from time to time. One day he came out with his boots and put them on the table in front of me. Someone had thoughtfully tied up his laces tight in all sorts of knots. He slammed a fork next to them and grunted: "canya untie these for me? Some C*NT went and fucked them up". It took me a while, but my nimble fingers worked them into straight laces again. He gave me a couple of smokes for my efforts. Then there was the guy who hated being medicated. We had to line up to get our meds from a mobile trolley outside the nurses station each night. One time, after he had been given his meds, he waddled away, baring his flabby bottom, as if to say "Youse are all Arseholes". There was a girl who used to wear gaudy makeup; she got out energy by belting out The Power Ballad, circling around the courtyard screeching Celine Dion and Whitney Houston numbers. Her versions were infinitely more entertaining than the original, if a little hard on the ears. Some people liked to order in pizza, whether they had the cash or not; they'd try their luck with the delivery boy saying "we'll get you the money tomorrow". Others were more blunt, saying stuff like "if you give me the pizza, i promise not to chew off your nose". I woke up one morning only to have a huge aboriginal woman staring intently at me. "What do you want?" I cowered away; she hushed me "you sleep...you sleep". Apparently she hadn't slept for 48 hours and got relaxation watching others sleep. A couple of days later she stole all the womens' toiletries bags, picked what she wanted and put the items in the nicest bag she could find. That wasn't such a funny thing at the time, but I can laugh about it now. Finally, there was a funny guy who used to play hide and seek with the nurses during the nights, when they had to do hourly checks. He would wander out of his room, finding hiding spots. One night he bolted into my room giggling and shut himself in my wardrobe, hushing his finger to his lips. Soon after, a nurse opened the door, flashlight in hand and shone it in my face. "Is Mark in here?" she skwarked. I shook my head and she left. Mark bolted out of my wardrobe after a minute or so, giggling all the time. Of course bad stuff happened. Of course I often felt a whole lot of paranoia, fear and anger. It wasn't a holiday, not by a longshot. It really pisses me off when people say shit like: "ohhh, it must have been good going to hospital for a little rest", as if there are jacuzzis and masseurs and adonises fanning you with palm fronds. Phaw. But it's not all bad in hospital. It wasn't for me, anyway.

Description of the onset of psychosis

Perhaps I'm wrong, but I get a feeling that many in the community fear being around people with schizophrenia or schizoaffective disorder due to a perception that such people can 'turn' psychotic in an instant and are inherently violent when in a psychosis. My experience of psychosis has been very different to this: I only develop full-blown psychosis after having a build-up of mania, which takes anything from several weeks to several days to gestate. 

 It's pretty easy to spot me (or most people, if you know them) being manic: excessively chatty, irritable, spending money I can't afford, excess energy, delusions of brilliance - pretty typical symptoms. It's only after I've been manic (fully-blown) for a few days that the paranoia creeps in. I begin by reading significance into things that have no significance; a classic example being to hold the notion that the songs on the radio are 'telling' me something, or that the television is conveying a special message for me, usually sinister. I then start being convinced of conspiracy theories, especially that people close to me have evil intentions. Finally I get external auditory hallucinations (voices) which are terrifying, nasty and mocking. By the final stages I am well onto needing to be in hospital asap. I cope with becoming unwell pretty effectively these days; because I live alone I don't infringe on other peoples wellbeing. I am aware that "it's happening" even though my grip on sanity is slipping. 

 When I start to feel like my mania is escalating out of control I ring my regional Psych triage; they have me on their files having rung them in the past. They instruct me to make an emergency appointment with my Psychiatrist, which I do at the earliest opportunity. If there is a wait to see my Psych I keep in frequent touch with the Psych triage number (which I'm sure drives them batty). If need be they fax my Psych about how I'm presenting over the phone, this can speed up seeing my Psych and if needed, getting a bed in hospital (private - as a voluntary patient). If I didn't have private heath insurance I would have to solely rely on the Psych Triage service and seeing my Doctor until (a) I got better along with adjusted meds my doctor would prescribe me or (b) my condition worsened and I totally lost the plot and needed to go to Public Psych hospital as an involuntary patient, although not all people who go in the public system are involuntary. 

 One main difference that strikes me between public and private psych hospitals is that in the public system you get more violence; both verbal and physical. In the private one you have to sign a contract upon admission saying you won't physically or verbally assault anyone during your stay. I guess what I'm trying to say is that for me psychosis is a gradual culmination of unwellness; I'm not nor would I ever be likely to just "snap" into being psychotic. There is a lead up to getting unwell, as described above. I wish people in the community would bother to learn a bit more about it, not just to assume things about psychosis from what they read/hear in the media (eg: man shot by police after wielding samuri swords and lunging at them; he was known to have schizophrenia). 

 The other thing I wish people understood is how terrifying it is to be in a psychosis; it's like a sinister nightmare, with distortions of reality lasting for days or even weeks until the antipsychotic medication has a chance to work. Then you tend to get really tired (heavy dose of meds) and put on weight (most antipsychotics really increase your appetite). Several weeks afterwards, there's post-psychotic depression, a really black place to go. Sucks, hey? 

 I wish someone with political clout had the experience of psychosis (not that I'd really want to wish it upon somebody), so that the politicians could do more than pay lip service to improving mental health care. So many people with serious psych illnesses are disenfranchised, or they slip through the cracks of the public system, never receiving adequate care and assistance. I'm fortunate; when I got really sick in 2003 I did get appropriate care for a change; the rebuilding has be slow but steady. However I know I am in a minority. 

 Housing is a major issue; I couldn't have anywhere near my current peace of mind were I still in transitional housing. Other people aren't so lucky. So.....psychosis.....yes I've strayed from the topic. If you're in the company of someone with schizoaffective disorder it's highly unlikely they would become verbally or physically agressive unless they were unwell, and that would, in my opinion be pretty obvious. I guess the point I'm making is that people don't just 'snap'; I never have. It's a build up of behaviours as described. I guess the perception that all people who have been psychotic/have the potential to be psychotic are dangerous is a sad reality. A perception based on misrepresentation and ignorance.