My theory on schizophrenia

oh yes indeedie. i haven't ever been diagnosed with schizophrenia but i've been diagnosed with borderline personality disorder. psychiatrists and other clinicians told me that i shouldn't go back to university because i couldn't handle the stress. psychiatrists and other clinicians told me that it was unethical to apply to a PhD program overseas because it was likely that i couldn't handle the stress. they told me that i'd experience some alleviation of my symptoms some time in my early to mid fourties.

if i listened to them i would have severely limited my life.

i kinda went '%#@&#! you lot' and did it anyway. sure i struggle at times (but then who the hell doesn't?) but i'm doing it. i didn't let them limit me.

now that i'm doing it they say 'oopsie you were misdiagnosed you never did have borderline personality'. they put me down as a misdiagnosis instead of a case of 'recovered before the age of thirty'. they predict that borderline personality disorder is chronic and every case of improvement they put down as a misdiagnosis. there is thus no empirical way to falsify the claim that the disorder is chronic. if i'd have believed i was chronic and limited my life accordingly they would be saying 'see, borderline personality disorder, chronic, we told you so'.

their predictions are often made true by self-fulfilling prophecy methinks. that is to say that if people who you respect (clinicains, for example) repeatedly tell you that you can't do something then you come to believe that you can't do it and therefore you can't. their prediction (and the effects of their prediction on you when you internalise it) make it so.

'you will never get better if you don't take your medication'
'i can't help you if you won't help yourself (ie take your medication'

how much do these attitudes harm people?

how much does believing that one can't cope without medication make it so?

it hurts me a great deal. clinicians can have all the good (paternalistic) intentions in the world they can still be misguided and they can still dehumanise you and make you worse even with the best intentions in the world.

i'm glad that you have come to an understanding that helps you, spiritual_emergency. i hope that you can inspire / help others who are not quite sure on the predictions that others have made about their lives... i hope that you can inspire / help others to disregard their unhelpful predictions and go on to live a life that YOU consider worth living.

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alexandra_k said:

- some consumers are very much opposed to anti-psychotics. they report that they sedate them and they do not like that.
- some consumers are very much in support of anti-psychotics. they appreciate the sedation.

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Not all anti-psychotics are sedating (Abilify, for example), and others can be taken once a day at bedtime (Seroquel, for example) so the sedation aids sleep but wears off by morning.

I imagine there are cases where certain anti-psychotics are prescribed specifically for their sedating properties, such as in the case of manic or aggitated psychotic states, and it could be argued that this is done for the sake of staff trying to manage patients' behavior, but it is also done for the protection of the patient, who could be a danger to him/herself and others.

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alexandra_k: psychiatrists and other clinicians told me that i shouldn't go back to university because i couldn't handle the stress. psychiatrists and other clinicians told me that it was unethical to apply to a PhD program overseas because it was likely that i couldn't handle the stress.

...

if i listened to them i would have severely limited my life.

i kinda went '%#@&#! you lot' and did it anyway. sure i struggle at times (but then who the hell doesn't?) but i'm doing it. i didn't let them limit me.

You, no doubt, would be a "non-compliant patient," alexandra_k. To which I can only say... good for you.

See also: Recovery: What Helps? What Hinders?

> Not all anti-psychotics are sedating (Abilify, for example), and others can be taken once a day at bedtime (Seroquel, for example) so the sedation aids sleep but wears off by morning.

What is the mechanism of action of Abilify and Seroquel? They work on the dopamine system to inhibit / prevent communication between the frontal lobes and the lower level structures. (The long term affects of that are the 'tardive dementias' that are often taken to be evidence of the neurodegenerative nature of schizophrenia rather than as evidence for the long term brain damage caused by medications messing with the dopamine system). They sedate in the sense that they inhibit communication between the frontal lobes and the lower level structures. They also sedate in the sense that they similarly inhibit communication between the lower level structures and the basal ganglia (which is what reults in the tardive dyskinesias - movement disorders) long term.

one often swears that alchohol hasn't affected one after one has had a glass of wine. cognitive and motor coordination tests reveal that one IS affected, however. one might swear that anti-psychotics aren't sedating during the day. cognitive and motor coordination tests would clear that up, however. it is unclear how much the cognitive differences found in people with schizophrenia are caused by the medication rather than by the supposed degenerative nature of the disorder.

why is it that two thirds of people in developed western nations have degenerative schiozphrenia whereas only one third of people in developing nations have degenerative schizophrenia do you think? surely... it doesn't have anything to do with medication? er... does it?

> but it is also done for the protection of the patient, who could be a danger to him/herself and others.

yes. paternalism. 'it is for your own good' 'we are trying to help you' and so on and so forth. we are trying to help you so much that we are locking you up in an institution where the nurses all hang out in their nurses station and have minimal contact with patients. we are trying to help you so much that we will spend 10 minutes with you and figure out which cocktail of medications to give you this week. we are trying to help you so much that we won't have caring people on the ward who you can talk to about your experiences and your fears and your worries. we are trying to help you so much that we will consider all of that irrelevant. something that will cease with strategic administration of medication.

misguided...

A few excerpts from Judi Chamberlain's article...

<blockquote>Professionals and patients often have very different ideas of what the word "recovery" means. Recovery, to me, doesn't mean denying my problems or pretending that they don't exist. I have learned a lot from people with physical disabilities, who think of recovery not in terms, necessarily, of restoring lost function, but of finding ways to compensate or substitute for what one may be unable to do. Some of the most able people I know, in the true sense of the word, are activists in the physical disability movement - they may not be able to see, or hear, or move their limbs, but they have found ways to do the things they want to do despite these difficulties, and despite those professionals who advised them not even to try. Without our dreams, without our hopes for the future, without our aspirations to move ahead, we become truly "hopeless cases."

I often hear professionals say that, while they support the ideas of recovery and empowerment in principle, it just won't work for their clients, who are too sick, too disabled, too unmotivated. Whenever I hear these objections, I want to know more about what kinds of programs these professionals work in, and what goes on there. I know that the professionals who knew me as their patient thought the same things about me. That's the dilemma of the "good patient." A good patient is one who is compliant, who does what he or she is told, who doesn't make trouble, but who also doesn't ever really get better. A "good patient" is often someone who has given up hope and who has internalized the staff's very limited vision of his or her potential.

Now, again, I want to make myself clear. I'm not saying that mental health professionals are evil people who want to hold us all in the grip of permanent patienthood, and who don't want us to get well. What I'm saying is that there's something about being a "good patient" that is, unintentionally, perhaps, incompatible with recovery and empowerment. When many of us who have become leaders in the consumer/survivor movement compare notes, we find that one of the factors we usually have in common is that we were labeled "bad patients." We were "uncooperative," we were "non-compliant," we were "manipulative," we "lacked insight." Often, we were the ones who were told we would never get better. I know I was! But twenty-five years of activism in the consumer/survivor movement has been the key element in my own process of recovery.

Let's look at this word "compliance." My dictionary tells me it means "acquiescent," "submissive," "yielding." Emotionally healthy people are supposed to be strong and assertive. It's slaves and subjects who must be compliant. Yet compliance is often a high value in professionals' assessments of how well we are doing. Being a good patient becomes more important than getting well. ... Getting better, we were informed by staff, meant following their visions of our lives, not our own.

...

We need to start encouraging people to dream, and to articulate their own visions of their own futures. We may not achieve all our dreams, but hoping and wishing are food for the human spirit. We, all of us, need real goals to aspire to, goals that we determine, aims that are individual and personal. I feel crushed when I visit programs that are training their clients for futures as residents of halfway houses and part-time workers in menial jobs. And if I, a visitor, feel my spirit being crushed, how do the people trapped in those programs feel?

Researchers have asked clinicians what kinds of housing, for example, their clients need, and been told that congregate, segregating housing was the best setting. At the same time, the researchers have asked the clients directly what kind of housing they want, and been told that people would choose (if they were given the choice) to live in their own homes or apartments, alone, or with one other person they had chosen to live with. At the end of the year, the researchers found, the clients who got the kind of housing they wanted were doing better than the clients that got the housing that was thought to be clinically appropriate. Helping people to reach their goals is, among other things, therapeutic.

One of the reasons I believe I was able to escape the role of chronic patient that had been predicted for me was that I was able to leave the surveillance and control of the mental health system when I left the state hospital. Today, that's called "falling through the cracks." While I agree that it's important to help people avoid hunger and homelessness, such help must not come at too high a price. Help that comes with unwanted strings - "We'll give you housing if you take medication," "We'll sign your SSI papers if you go to the day program" -is help that is paid for in imprisoned spirits and stifled dreams. We should not be surprised that some people won't sell their souls so cheaply.

Source: Confessions of a Non-Compliant Patient

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alexandra_k said:
yes. paternalism. 'it is for your own good' 'we are trying to help you' and so on and so forth. we are trying to help you so much that we are locking you up in an institution where the nurses all hang out in their nurses station and have minimal contact with patients. we are trying to help you so much that we will spend 10 minutes with you and figure out which cocktail of medications to give you this week. we are trying to help you so much that we won't have caring people on the ward who you can talk to about your experiences and your fears and your worries. we are trying to help you so much that we will consider all of that irrelevant. something that will cease with strategic administration of medication.

misguided...

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Alex, has this been your experience in a psychiatric hospital? If yes, I'm really sorry. That sounds barbaric and not at all my experience working in psych hospitals, current or past, although some definitely are better than others.
Take care,
Okie

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okiedokie said:

Alex, has this been your experience in a psychiatric hospital? If yes, I'm really sorry. That sounds barbaric and not at all my experience working in psych hospitals, current or past, although some definitely are better than others.
Take care,
Okie

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I must say that Alex's experience is not dissimilar to mine. My last hospital experience was in 1990, so things may have changed since then. But the 1990 hospital was one of the prestige institutions in the city, and associated with a university. Not everything which has status and prestige merits it.

I really am enjoying this thread. I didn't know there were so many "rebels" here. It's nice to hear familiar names such as Alice Miller, Dr. Mosher, Judi Chamberlain...

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pachyderm: I really am enjoying this thread. I didn't know there were so many "rebels" here. It's nice to hear familiar names such as Alice Miller, Dr. Mosher, Judi Chamberlain...

Some of these discussions have been ongoing for quite some time. Archive space is apparently in short supply for schizophrenics and their kin but it appears those threads are still available if you know where to find them. Here's one of my personal favorites you may also enjoy: Schizophrenia & The Hero's Journey

Meantime, do feel free to share more of your own experience and what you have found most helpful in your own recovery. Some people find drugs helpful, some don't. Some have found tremendous healing in their relationships with professionals, some haven't. Some have used alternative methods, others have never even heard of them. I think it's extremely beneficial to hear from many different voices because our experiences are unique but by sharing what has helped us personally, we may be able to help others.

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spiritual_emergency said:

Meantime, do feel free to share more of your own experience and what you have found most helpful in your own recovery. Some people find drugs helpful, some don't. Some have found tremendous healing in their relationships with professionals, some haven't.

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My "recovery" is a continuing thing, spanning decades now. I have found no psychotropic medications useful, and I've taken a lot of them. My relations with "professionals" ranges from massively destructive (to me) to, finally, very helpful in the last few months. What has been most helpful is a lot of reading, finding stories of the many people who have, mostly on their own, fought their ways out of despair -- and coming gradually to a sense of my own worth and accurate perception of what the origins of my experience are. For a long time, especially after my first attempts to find a sense of self-worth were beaten back, I tried the recommendations of others. They didn't work. So however frightening it is (and it is) I embarked on a path of my own, attempting to explore the fear. So far I am only partially successful at doing that. But I see now some reinforcements in the pages of your and other Web sites.

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pachyderm: My "recovery" is a continuing thing, spanning decades now. I have found no psychotropic medications useful, and I've taken a lot of them. My relations with "professionals" ranges from massively destructive (to me) to, finally, very helpful in the last few months. What has been most helpful is a lot of reading, finding stories of the many people who have, mostly on their own, fought their ways out of despair -- and coming gradually to a sense of my own worth and accurate perception of what the origins of my experience are.

I more or less consider myself to be recovered although I am still continuing to learn from that experience. I did live very quietly for a number of years and to a certain extent, still do. Despair was certainly part of my recovery -- tonglen practice and finding others who could identify with my personal experience helped considerably in that regard. There's much to be said for the benefit of time as well.

Like you, I've also done a great deal of personal reading in order to understand my experience. I've summed up my recovery experience here should you care to read it: My Personal Definitions of Recovery. Do feel free to wander through either of my blogs as the spirit moves you.

Meanwhile, it's always tremendously encouraging to hear from others who have been there and have found their way back to stable ground. This is particularly so, I think, for those who have been only recently diagnosed and wonder what is to become of their life. It's very important for them to know that recovery is a very good possibility for them, as is a life of meaning and purpose.

Nice to meet you pachyderm.