Schizophrenia

Right, so, I heard something on the radio the other day about the ever present problem of supporting people with schizophrenia. It was a sensitive piece, full of information for the uninitiated about what schizophrenia is, what are the symptoms, what are the problems of managing it, and, crucially, how difficult it is for other people (i.e. families) to handle it.

They were mainly talking about kids on this show – parents’ problems in coping with their children’s psychotic episodes and lack of trust etc. etc. – and I suppose that this might have added to their need to be sensitive on the issue. But still the whole programme made me angry because, aside from raising awareness about the illness and shoving it under everybody else’s noses yet again, the actual segment was little more than a public service announcement, complete with trained health professional whose sole purpose, I assume, was to give practical info and advice in a nicely sanitized soundbite.

What got my back up was this: this is not a new problem. Schizophrenia has existed for a long time – not always under that name, but nonetheless. People know about it. They know it exists. THEY JUST WISH THEY DIDN’T.

People have been talking for a long time about the need for more understanding about mental illness in society. These messages have been out there for a while. I don’t know about other countries, but certainly in the UK there are ad campaigns all over the TV, radio and anywhere else they can find, to show people that there is a significant number of mentally ill people who need more support and understanding and who are not getting it, and who also, perhaps more importantly, are receiving a lot more prejudice than help.

It’s true. My mother is schizophrenic and I know this first hand. There is little support for the people who have these sorts of problems, particularly in terms of the more voracious psychotic disorders, because even in this day and age people don’t know what to do about them. Every now and then there is a story in the news about a schizophrenic patient who has been mishandled and committed some sort of atrocious crime. And when this is reported it is always made abundantly clear that, if something of this nature has happened then clearly even well-trained professionals cannot handle the problem.

This, unsurprisingly, frightens people and then, less surprisingly still, anything that might have been done to allay people’s fears in the first instance will be entirely forgotten.

It has long since made me angry that, despite all these great ad campaigns to show people that they don’t really need to be afraid and that, rather, they should learn to understand, all it takes is one news report about a schizophrenic nail bomber or murderer and we all go right back to where we started. The media always reports these things insensitively; I’ve seen them do it. And they do it because they also want to put the message out there, even if it is indirect, that schizophrenics are evil and dangerous.

Don’t get me wrong, schizophrenia is not easy to cope with, either for the person who has it or for the people around them. My mum has only really had me to support her in the last three decades and, although she has the regulation amount of contact with a psychiatrist, the reality is that her family have always been expected to be her carers. This would have been fine if we were a big family and incredibly close – but we’re not. We are a small, mismatched bunch of loners (we mostly all hate each other in my family and just want to slope off somewhere and forget we’re even related) and most of the people that my mum ever really relied on had their own lives, or they were just too old and in need of help themselves. Growing up I lived on my own with my mum and we had little contact with the rest of the family, and I don’t remember any of them, apart from one of my uncles, ever giving her or me much in the way of help.

They mostly walked away because they didn’t want to deal with it and, looking back, I can’t blame them because I would have done the same if I’d had the choice (which is not to say that I’m not angry with them for doing it).
But the trouble was, of course, that nobody ever took anyone in my family aside and said to them: “Look, this is how you need to cope with this. This is what’s wrong with her.”

No one presented any of us with a handbook on how to deal with schizophrenia, because there isn’t one. And, more importantly, no one ever explained it to me – which was a huge mistake because I was the only one of the family that was left alone with her for long periods of time. I lived with her, no one else did.

When I was six she was sectioned under the Mental Health Act and sent to a psychiatric hospital where she stayed for about ten months. She was taken away in a very dramatic way. The police kicked in our front door and she was literally dragged out of our flat kicking and screaming and thinking that the ambulance men were going to kill her. I was taken away by social workers to my Granny’s house.

Now, these social workers, of course, did not take the time or trouble to explain to me where my mother had gone or what was wrong with her (because no one ever tells a child “scary” things like that when they’ve just seen something traumatic, I mean what would be the point of telling them the truth, right? It’s not like they can really understand! *Note the sarcasm*) And, forever afterwards, by almost anyone who would talk about it, it was alluded to in these terms: “Your mummy went away to hospital because she was poorly and she needed to get better.”

Nobody told me anything because they thought, stupidly, that this was a better way to protect me. They forgot that I would have to go back to live with her afterwards and they forgot, further, that you don’t just “get better” when you have schizophrenia. It doesn’t go away. So these social workers and doctors and God knows who else, came in and took care of the immediate problem, explaining nothing to anyone on the way – not even to the so-called grownups in my family, who, I think, understood about as much about my mother’s problems at that point as I did and who put all their faith in the far more learned doctors who knew all about it. (They just trusted that other people would deal with it and that that would be it.) And then, after they’d done all that, they just went away again and left us to it: me and my mum.

On this radio show that I was listening to, they were talking about the need for more support for families who cope with schizophrenic people – people who are there all the time for those people when the doctors, psychiatrists and other social worker people cannot or just can’t be bothered to be present to help. But this is surely not any kind of new concept? Surely this has been obvious for years? And if not why not?

When my mother was diagnosed it was the early 1990s and, looking back I have begun to think that the system must have been pretty slapdash and incapable at that time (more than it is now), because we were really just palmed off and patched up and sent on our way by all the people who got involved with us. The social workers did follow up visits with us after my mum came home to make sure we were doing OK. But this was only cursory and for the sake of fulfilling a requirement and they didn’t actually try very hard to find out if there was still anything wrong. They certainly didn’t stick around long enough to check up on me properly because if they had they would have known that I was having nightmares, throwing tantrums, refusing to go to school, comfort eating to the point of making myself seriously overweight . . . I also used to be told off at school for chewing on my hair – a classic sign of severe anxiety and stress that the teachers only found mildly annoying and used to call me out about in front of the whole class. But no one noticed the significance of these things – or if they did they didn’t make an issue of them. My teachers at school noticed that I was the quiet kid who was afraid of everything, and they knew about my mother, but they didn’t put any of it together.

Basically, I guess what I’m saying, is that no one ever bothered to properly ask me if I was OK. They all just seemed to assume that if I wasn’t alright it would be obvious. My mum looked like a perfectly normal person, and she did everything that she was technically supposed to do: feeding me, clothing me, etc. etc. No one asked about anything else because it wasn’t their business to.

So they didn’t know about the things she said to me behind closed doors. They didn’t know about the delusions and hysteria and crazy ranting that I was subjected to regularly when I got home from school. All of this was random, naturally, because schizophrenia is an involuntary thing, the moods of that person swing uncontrollably and the way they see things flips around very suddenly so that you can never predict what they are going to say and do next.

I was always afraid when I was growing up – I’m still afraid of my mother now really – but more so then. I craved stability and I dreaded leaving the house every day in case something changed when I was gone. If I left the house I would have to worry all day about what I might come back to. When I was at school and having a good time I was afraid to go home because I was worried that she might be in one of THOSE moods and then I would be in for something horrible. This was enough to make me rigid with terror sometimes and, even now, when I hear a certain tone in her voice, I get a sudden griping feeling in the pit of my stomach, or my heart starts pounding, because I know that something unpleasant is coming.

Other people didn’t see this though. My mother, in herself, is very good at making herself look perfectly normal most of the time, whatever voices she might have in her head, and, as for me, people just thought I was a bit weird. But they didn’t really understand; they thought I was the mental one. I still get that now from some people, because I react to my mother and they don’t know what she’s like, so that makes me look like I’ve gone round the bend as well – they think I’m making it up or being overdramatic.

When I was at school, the other kids at my school thought I was weird, and the teachers, even those who knew about my situation, thought I just needed to come out of my shell. They didn’t think about the fact that I was living alone in a house with a schizophrenic woman without any real support and with hardly anyone else to talk to. (My dad was next to useless and lived somewhere else – but I think they must have assumed he was involved somehow.) And I didn’t consider this much either because, when you’re a kid, if the adults don’t question the rightness or wrongness of something then neither do you. If there was something really wrong with this situation, I thought, then someone would have done something about it. So it didn’t occur to me that it was in any way possible to ask for help from anyone. It was just what it was. I was stuck with it.

But as I’ve grown older I’ve started to feel far more bitter about this. Because now I can recognize that I should never have been left on my own with this; particularly not at such a young age. And, far from supporting my mother, the family and the school and the social system at large, should really have supported me. I was on my own.

So when I heard this woman on the radio talking about the need to start (START!) to support parents and families of schizophrenic people, I nearly choked! I have so many problems with this that I don’t even know if I can get them all down in the space of one blog post. But here goes:

1. This should have been the case all along. Families/parents/children with schizophrenic family members have ALWAYS needed support and where the hell was all this concern twenty odd years ago when I needed it, and even further back than that when others were in need?

2. There was such a strong focus on parents who care for children that it made me think that that was their only interest in providing support – never mind anybody else!

3. And, most importantly, even though some faceless health professional has gone on the radio and said all of this, IT WILL NOT MAKE THE SLIGHTEST BIT OF DIFFERENCE. Because people do not care.

This is the crucial thing that you have to realize about mental illness: you can raise awareness about it all you like, but it will make absolutely no impression on other people who have had no direct experience of it. Those people just count themselves lucky – if they think about it at all. And then they carry on and ignore it because they don’t want to know about it. Even the professionals who deal with it every day don’t really want to know about it. They pass the cases along as fast as they can just so they can get them off their hands. Why would anyone else care? Schizophrenics are scary and, VERY OCCASIONALLY, dangerous people, and, unless you actually know one first hand, you are probably only going to see this angle of them.

This is what I have learned in my life. When you have a problem like this on the rise in society, people get scared. And when people get scared they pass the buck. No one asks any questions, no one pays any attention and no one gets involved because, as long as they’ve passed it on they can assume that someone else, somewhere, will deal with it and that that will let them off the hook.

My teachers didn’t ask me anything about my mother or my home situation, they didn’t get worried about me or ask if there was anything wrong, because they were just busy trying to teach and go about the already stressful task of getting hundreds upon hundreds of kids through exams. They didn’t want to know about problems at home, about mental illness, about what my mother did or said to me when nobody else could hear.

They might have paid attention if I had actively gone and said to them: “Look, my mother is saying things to me about how I’m the one who made her ill, and how it’s all my fault that her life has gone badly and how she wishes she’d never had me, and this is upsetting me to the point where I can’t concentrate on anything and I’m considering suicide.” That might have worked, now that I think about it. I could also have told them about the time when I was 14 when her medication stopped working and she flipped out completely so that I had to shut myself in my room and spend the night terrified that she was going to kill me. If I had told them that then I’m sure they would have done something. But you see, I never did tell them. Because I just thought they all knew that that’s what it was like. I thought they’d just left me there because they’d all decided it was fine. So I didn’t question it. It was horrible and I hated it, but I didn’t think I could ask for help to get out, so I just got on with it.

I’m only questioning it now really because I’m older and I have had the benefit of wider experience – my knowledge and understanding of things is wider and more critical now than it was before – and now I’m angry about it.
That thing on the radio really just made me wonder about how many more angry kids (however old they’ve grown to be now) are out there in the world. How many people are there who’ve had the same experience, or a similar one, as me? How many people have lived with a schizophrenic parent or family member and been left to shoulder almost the whole burden of that by themselves without support? Because I’m thinking there must be at least a few, right?

I want to know this from people. Who else thinks that the system stinks? It doesn’t matter what country you live in, in fact that would be quite interesting to see how it’s dealt with across the world. I live in England, so I know all about us, but the USA? Or the rest of Europe? Is this also typical there?

As regards the problem of informing people, it’s not just about getting people to be more tolerant or rattling off a list of symptoms that people can memorize. It’s about shaking people and waking them up and making them see that this is a REAL fucking problem! And that you can’t just close your eyes and pretend that you can’t see these people and hope they go away. They don’t go away. And they don’t get better. And they really fuck about with other people’s heads.

I needed someone with me to support me when my mother was telling me that all the things that were wrong in her head were actually things I had done to her. When she was projecting her own problems onto me and, actually, doing a pretty good job of convincing psychiatrists that I was the one who had psychological problems. When she was undermining my confidence in myself by telling me, in the most awful, seemingly kind, soothing, motherly voice, that I wasn’t capable of things or that other people who I thought were my friends were not really friends at all.

My mother distrusted everybody and she used to encourage me to do the same. Even now she tries to get me on her side against the world at large whenever she thinks people are ganging up on her. She assumes that everyone else is intent on damaging her in some way and the first thing that she will always say to me is that “We need to stick together.” As if the world is about to end or we’re about to be attacked by flesh eating zombies or something and the two of us will have to smash our way through with baseball bats like the guys in “Shaun of the Dead”.

When I was a kid she tried to tell me, in the most vindictive and head-fucking way possible, that my friends didn’t really want to be my friends and that they were only messing with me and laughing at me behind my back. When I spent time with my dad – whom I loved more than anything or anyone for most of my childhood – she always made sure afterwards that I knew he didn’t really want me. It was her way of trying to cut through the elation and security that I always felt when I was with him. I loved and trusted him unconditionally and she knew, or she felt, that if she let me spend too much time with him he would “convert” me to his way of thinking (the rational way) and she would lose her ally. She did everything she could to destroy my relationships with other people and, if I sided with them over her, that was it; her trust in me was lost and I was deemed a traitor.

This is what it’s like with schizophrenics, really. You walk on eggshells all the time. They have no trust, so anything you do can set them off and, once they become suspicious of you, you’re fucked. They will act against you in all kinds of ways because they think that they have to defend themselves against you. They see you as dangerous.

Now I know that you’re going to be thinking, “Ok, so what’s the answer then? What do we do?” Well, I don’t know, because I agree that schizophrenics need more support. I agree that there needs to be more knowledge amongst the general public about what it is and what it does to people. I would support all of that and more.

But I still don’t think it would do any real good because if you ask me the question(s): “Are schizophrenics dangerous and do we need to fear them?” I would pretty much have to say yes.

I’m not going to say they’re all going to go out and kill people – because, really, very few (1% or less) of them actually do. But, yes, they ARE dangerous. They act irrationally and they lash out at people, and they give you no warning whatsoever that they are about to do this because one minute they’re fine and the next minute they’re someone else. They’re afraid all the time, you see, they think they’re going to be hurt. And if you believed that someone or something was going to hurt or kill you at any moment (whether it’s a random man in the street or an imaginary monster that you think you can see in the middle of the supermarket where, in fact, there are only shoppers) you would probably lash out too. You know what they say about things like fear producing superhuman abilities? I think that’s what happens. Schizophrenics have a level of fear that allows them to lose all sense of what they’re doing and, in that state, they are capable of anything.

So it is dangerous. I’m sorry, but it is. And I think we all have to start realizing that there are people like this everywhere. They walk the streets – of course they do – because they’re not criminals, but they could do anything. Short of locking them away (in that age old custom that we always resort to when we don’t want to handle people any more) there’s just no answer, and pretending that there is and that we can solve this problem simply by giving public information announcements on the radio and telling people not to be scared is really not going to achieve anything.

I’ve spent most of my life locking my bedroom door and doing anything I can to keep away from my mother. But what am I supposed to do? She’s my mum. And she’s only got me.

It is at this point that I start to have all sorts of uncharitable thoughts concerning my mother, so I’ll stop here. But I wanted to explain this to people, because it’s something that other people just don’t seem to understand unless they’ve lived it. I just hope I’ve made an impression.