Diary Of A Psychiatric Survivor

Elyn Saks, University of Southern California Law Professor and prominent “schizophrenic”, recently gave an interview to the magazine Scientific America. Her interview was titled Diary of a High Functioning Person with Schizophrenia. I thought it would be interesting to respond to her perspective with my own.

I’ve heard people say everyone is unique, and I suppose there is some truth to saying so, Elyn Saks and I should certainly not be held in the same cage or pen together at the zoo. I would say that as far as perspective is concerned we are practically two completely distinct species.

Her view of schizophrenia, and particularly her own take on it, for one thing, seems very conventional standard psychiatry textbook stuff. She describes it as a “waking nightmare”–delusions, hallucinations, disorganized and confused thinking.

No doubt. Been there, done that.

She claims her symptoms were mostly “positive symptoms”–the obvious, delusions and disorientation, except for a couple of year’s at Oxford when she displayed “negative symptoms”–“apathy, withdrawal, inability to make or find friends.”

External reasons are not dealt with here. It’s all a matter of bio-chemistry and genetics. Did she crack under pressure? Did her bad mental and emotional state have something to do with a bad living situation? The assumption here is that such was not the case.

Professor Saks crack up took place in a social vacuum. We get a glimpse into her alone, and the constellations of people around her have been unfocused from the picture.

The rationality, in other words, behind irrationality is lacking in her perspective. It was not so in my case, I was in a very bad situation, socially, and the only way out was to escape into a fantasy of my own making. When you are caught in a room without doors, and you can’t build a door in reality, you are likely to build that door in your head. Eventually I saw through this metaphorical lack of a door (read options), and I found the factual door.

As my husband likes to say, psychosis is not like an on-off switch but like a dimmer. At one end of the spectrum, I will have transient crazy thoughts (e.g. I have killed people) which I immediately identify as symptoms of my illness and not real. A little further along the spectrum, I may have three or four days of being dominated by crazy thoughts that I can’t push away. And at the far end I am crouching in a corner shaking and moaning.

My psychotic break, or breaks, are history. If there is an on/off switch it has been switched off. I’d say I’ve managed to learn pretty effectively how to maneuver outside the mental health system. It’s not a matter of dimming crazy thoughts down here, or if it was, they’ve been dimmed out. I can say that after being labeled “schizophrenic”, I’ve completely recovered my wits, and disorientation isn’t such a problem anymore as perhaps it once was.

What’s more, I support a person’s right to think differently from a psychiatrist and his diagnoses, and to express those thoughts. I think there is life beyond the mental hospital, life beyond mental health treatment, and life beyond the psychiatric textbook. I like to call myself an advocate for the use of the doorknob.

Work kept Professor Saks going. I hope it was enjoyable work. I know that everybody makes sacrifices, and there is always a question of how great those sacrifices must be. I hope Professor Saks has also found time to rest and recreate. Work is her answer, and it gives her focus. Good, but I don’t imagine she is killing herself with overwork either, but then I speculate.

My bottom line? I like to say that I am very pro-psychiatry but very anti-force.

That’s her, me? I’m very anti-psychiatry and very pro-choice. When you force somebody, you take away their liberties, civil or otherwise, and this just doesn’t jive with the constitution of the United States. Professor Saks, being a law professor, should be very well versed in such matters.

There is a point when Professor Saks says she believes people sometimes lack capacity, and as lack of capacity is legal terminology, I’m not going to get into a linguistic skirmish over the subject. I’m just going to maintain my personal separation of the powers of church and state. I have no such ‘belief’. I’d prefer to take such matters on a individual case by case basis.

I disagree with her completely when it comes to what she calls the “one-free-shot” deal. She is certainly not against force when it comes to first time commitments. She wants to relax the criteria in these cases for civil commitment, outpatient commitment, and forced drugging. Because many people are grateful for the treatment they received later, she claims, such actions are justified. My feelings are that state hospitals are such dreadful institutions of total despondency and despair, that people are better off anywhere else, and that there is no excuse for locking people up against their wills on medical pretexts in what amount to prisons by another name.

I feel the recidivism rate in state hospitals in many ways has a lot to more to do with habitual ways authorities have of dealing with people than it does with the strength of any alleged illness.

She is a part of a study hoping to learn what makes an individual with ‘schizophrenia’ “high functioning”.

Well, I can answer that one pretty easily for myself, and I would never take part in any such study. It’s not listening to the psychiatrist that makes this individual “high functioning”. Much of today’s mental health treatment can be physically damaging to the person receiving such treatment. Long term drugging, for instance, can bring on those “negative symptoms” Professor Saks was talking about, and when it does, the indication is often that brain damage may lie behind those “negative symptoms”.

It’s interesting, though, that my life actually got much better once I stopped fighting the diagnosis and trying to prove—by managing successfully without medication—that I wasn’t ill. I always undertook such efforts with great gusto and always failed miserably. Once I accepted the illness and the need for therapy and medication, my life got much better. My illness actually came to define me less—it became accident, so to speak, and not essence.

Her experience hasn’t been my experience at all. We have terminology problems, in the first place, when we define personal crises in medical terms. There is a person in there, and there is no need to blot that personality out with the record of a diagnosis. It only took five fingers to scribble that diagnosis. Not only am I not a diagnosis, but any diagnosis I received is history. I have been desperate, surely, but the mental health profession never came close to relieving that despair. I got better by throwing off my label of mental illness, and by leaving the confines of mental health rehabilitation. This was not because I ‘graduated’, so to speak, no, it was because I recognized the absurdity of the system in which I had been entered, and I exited. I recognized that absurdity for what it was, and I chose sense instead. That was my ‘graduation’. I can’t say that everybody should do as I did, but what I can say is that it has worked for me.

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26 Responses

  1. Excellent post! It’s saddening and maddening how frequently personal crises are considered biochemical in origin, and people’s own explanations of what they’re experiencing disregarded. I was diagnosed bipolar while living in a highly emotionally abusive situation, and understandable distress got pathologized. It’s hard to develop decent emotional regulation when living with the unstable–I can understand the urge to escape that might lead to psychosis!

    I have been desperate, surely, but the mental health profession never came close to relieving that despair.

    Well said. I really identified with the idea of recognizing absurdity and choosing sense, too. Getting rid of the Broke Brain Syndrome way of looking at my own situation made it possible to start recovering.

  2. Thank you for this post. Elyn Saks’ bias for a bad-brain-disease-illness explanation of “schizophrenia” undermines any validity of her role as a “scientist” and “researcher”.

  3. I admire Elyn Saks. In this society, it takes a lot of guts for a law professor to “come out” as having a psychiatric diagnosis, especially one as feared as schizophrenia. She took a big risk.

    As Saks talks to more and more survivors, she may come across the kind of reasoned and logical support for anti-DSM, anti-traditionalist views that could change her mind and vocabulary.

    I know this approach is what’s gradually winning me over – talking to people who convince me with their good sense, rather than those who would criticize me for my untutored ignorance.

    • I’ve heard the argument about bravery you are making before, but I can’t entirely buy it. Elyn Saks position is pure biological psychiatry. She is pleasing the pharmaceutical industry, the APA, and forced treatment groups such as NAMI and the TAC by taking it. She probably would not have won this recent MacArthur grant she won, that has been a such stir in the news, without it.

      I don’t think it logical to say to that this sort of a ‘coming out’ is brave. There are other people in the legal and educational professions who have had ‘mental health treatment’ in their lives. Some of these people have even managed to put their illnesses behind them.

      If Professor Saks had said she was no longer ‘seriously mentally ill’, she would be open to charges of being ‘in a state of denial’, or ‘lacking insight into the seriousness of her condition’, from a psychiatric viewpoint. When ‘coming out’ translates ‘sold out’, it does not translate into a particularly courageous act.

      There are viewpoints besides the ones Professor Saks expouses, as a law professor and a citizen I hope she is open to input, insights and suggestions coming from those with disparate points of view that might be at odds with her own.

  4. Great post! Thank you for sharing your experience!

    I totally agree with what you said, “It’s not listening to the psychiatrist that makes this individual “high functioning”. Much of today’s mental health treatment can be physically damaging to the person receiving such treatment.”
    It’s time we make our voices heard!!!!

    Take care & visit my blog when you can!

  5. A very real and uplift ing blog. Reasuring too. The systems I used to ‘fit’ into ie my family, psychiatry and work used to be like jigsaw puzzles only I had to be medicated to be a part. Now at long last ive woke up at 54 yrs of age. Im coming of meds have seperated from the family, psychiatry and work I had and am discovering a whole fascinating world within ie my real self. Real feelings and my own truth are surfacing. I hope Elyn Saks doesnt go through her whole life accepting the bad-brain-disease -illness explanation, what a tragic loss

  6. Great blog post! Haven’t read any other of your posts yet but this has the glint of being one of my fave blogs…

    One piece of friendly advice. Stop using the word psychosis.

    Psychosis is nothing but a pseudomedical term that relates to no known objective disease etiology… is labeled with no biological tests, and is better replaced with the word ‘distress’ or ‘crisis’ or ‘period of overwhelm’….

    Any oxygen you give to the word ‘psychosis’ just fuels the fire and makes shrinks look like real doctors, which they ain’t, as we know.

    Also, at all times the word ‘medication’ should be replaced with ‘drug’.

    Prick their balloons at EVERY TURN. The only power you have is your word choice in a forum like this…. so make them wisely.

    Maureen you lovely woman, my heart goes out to you, waking up at 54! I certainly mourn your lost years with you…. your anger is a gift… and use it wisely to work to raise awareness of the atrocities of psychiatry.

    I also like the comment poster who told us to go easy on this law professor, for she knows not what she does… she may yet come to speak to survivors…. and change her tune….

    It’s normal to get angry when the indoctrinated mental patient role acceptors are given high profile soap boxes….. because when we listen to them… we just wish it were us being given such a chance to reach a wide audience and speak truth to power…

    Learning to tread softly softly while still rightly brimming with justified rage…. is the salt in the wound all us survivors must live with… its very hard…. but we have to focus and think about the long term.

    However, you can only go softly softly so much when it comes to people who are threats to our liberty, people who are pro forced drugging, are a threat to be neutralized, you just have to think very carefully about how to engage the person on a case by case basis who might be getting a soap box… none of us like to see oxygen being given to anyone who wants to take away our human rights…

    • Sorry if it took me awhile to get your comment on here with the others. It appeared in my spam queue for some reason, and I had not checked it in awhile.

      I will have to give the matter a little thought before I remove “psychosis” from my lexicon entirely. I can see your point, but we use words to communicate, and I don’t see you offering much of an alternate expression. The P-word, in this instance, would just be confusing.

      One can be in “distress” or “crisis” or “period of overwhelm”, and yet remain in touch with reality. “Out of touch with reality” may begin to convey what this word expresses, but why use 5 words to say what you can say with 1.

      Of course, we are also talking about a miscommunication in which there could a lot of interpretation involved.

      You may be right regarding the pseudo-scientific validation psychiatry demands with the use of this word. Psychiatry, after all, suffers from the delusion that it is a science.

      Oops, excuse me. I used delusion, and that word may cause a problem. On the other hand, I do a search for the word’s origin, and it goes back to 1420. Delude goes back even farther to 1408. If I’m not mistaken, psychiatry as a profession doesn’t go back that far at all.

      Psychosis only goes back to 1847, and that fact kind of proves your point.

      I usually use drug instead of medication. In this instance, perhaps I was too taken with responding to Elyn’s use of the word. I don’t see anything medicinal about most psychiatric drugs what so ever. Poison is another apt term for these drugs that I have used on occasion.

      When you talk about taking oxygen away from people who deprive other people of their human rights, among which we include the right to liberty, I couldn’t agree with you more.

  7. See, I think I have an idea where Saks is coming from, and frankly, the point of view has some merit. Perhaps it’s not as strong and vital as your understanding, but discarding it out of hand – and ridiculing her – just paints you as doctrinaire. That’s unfortunate, because you have a lot of important things to say, and I’d like more people to listen. That’s not going to happen if you write them off. It’s the exact attitude we so deplore in the psychiatric community. Don’t stoop to their level.

    • Doctrinaire? That’s a laugh. My concern is human rights. Preserving our basic freedoms is an issue that is of utmost importance to me. I will support Elyn Saks right, or anyone else’s for that matter, to receive mental health treatment so long as they in return respect my right to refuse any such treatment. I don’t get the idea Professor Saks would necessarily respect a person’s right to refuse mental health treatment. Having said that, I would not curtail her freedom of speech. I don’t want to discourage discourse on this or any other subject.

  8. Jenny, I agree with you completely. We need to be able to cross the aisle and speak to those we don’t agree with with respect.

    While I am completely opposed to the biopsych model I do certainly see a lot of us acting like the inverse of psychiatry…shoving our solutions down others throats. It’s a shame.

    Self-determination relies on respecting the choice of others. That is what pro-choice means.

    that being said, I love this article.

  9. Elyn asks for advance directives that would be used to determine what treatment a person facing hospitalization would be given, including none. In her model I think an advance directive could be written by someone who has never been hospitalized as well.

    In her memoir she discusses the wonderful therapists and psychiatrists she has had, as well as a few that didn’t work out. Having had a bunch of bad psychiatrists and one good one, plus a few hapless therapists and two good ones, I appreciate the good ones, but they may be scarce.

    She specializes in the rights of the mentally ill, but I agree she is pro-drugs. Her worse nightmares are from incarceration and restraint, whereas for her the drugs have been either helpful or not so bad. This is not true for everyone.
    James

    • When you speak of the ‘mentally ill’, then the question becomes are these ‘mentally ill’ not human beings, and if they are then human beings, should they have fewer rights than other human beings? We punish people in the criminal justice system for breaking the laws of the state, what we are punishing people for in the mental health system is a little beyond me.

      You are right, not everybody has found psychiatric drugs helpful.

  10. Thanks, Lucy! I’m hoping that more and more people are persuaded, including those who are now vigorously pro-psychiatry. If APA members started talking about self-determination, choice, etc., wow! what an impact that would have! And I’m optimistic, because that’s been my orientation. I only recently began to consider and appreciate opposing views, and it wasn’t because someone was telling me how wrong-headed I was! What happened with me: I interviewed Will Hall for the Portland Mental Health Examiner site on Examiner.com. I asked him questions that you guys would probably consider completely stupid and ignorant. But he never said a word of criticism. He explained a different viewpoint, and he made such a strong case that I was completely stunned. I ended up publishing a three-part article because I didn’t want to delete any of his words, and since then I’ve been finding out more and more. That’s where I’m coming from. And believe me, if I can change, pretty much anyone can.

    • The powers of persuation should never be underestimated. Thank you, Jenny, for interviewing Will Hall. He has a lot of good things to say sometimes, and I’m glad he has found somebody who was receptive to those things. I agree with you in the sense that I believe we shouldn’t give up on anybody, nor should we let any opportunity slip by that may prove advantageous. I also realise that there are limits to the powers of persuation. One’s chances of dissuading pharmaceutical manufacturers, and the psychiatrists in their pay, from doing what they are doing is rather remote to say the least. (Think allied versus axis powers.) One’s chances of finding sympathizers and supporters are much better where there happen to be skeptics and disbelievers in this business of dehumanizing people through psychiatric labeling than it is in the ‘church’ of psychiatric labeling. I’ve heard Will Hall speak about the use of ‘camouflage’ when it comes to dealing with such ‘believers’. I say, “Alright”. Whatever works. I think it can also be useful to communicate with the ‘layity’, even if this ‘non-clerical’ work might amount to little more than ‘singing to the choir’ so to speak.

  11. First of all: I haven’t read any of Elyn Saks’ writings. I’ve read a whole lot of what I assume isn’t much different from her viewpoints, and it made me feel incredibly sad each time, so I’ll probably refrain from reading any of her writings also in future. So, correct me if I’m wrong regarding Elyn Saks’ viewpoints in any of the following.

    What I find extremely disturbing about this discussion (as well as about countless similar ones all over the net) is that someone who, as I see it, advocates not for “the mentally ill”, but for “mental illness”, “schizophrenia” in particular, to be a genetic brain disease, and for “insight” into this alleged truth to be the one and only way to recovery, is called brave and admirable, while advocating for a view of “mental illness” as being existential crisis, and for “lack of insight” into the bio-model to be most empowering immediately has people raise their fingers: “Don’t diminish someone who has the bravery to advocate for the status quo!” What?!

    How come that one viewpoint is unconditionally cheered at, while another, different one is condemned and tried to be silenced, over and over again, when the only aspect to “justify” this reaction is that the first is in line with the mainstream opinion, while the second questions this very same mainstream opinion?

    It may be true, that giving in to the pressure from her surroundings, that also Elyn Saks without doubt was subjected to, and buying into the bio-model and the drugs was the best for Elyn Saks to do in her personal situation (although I doubt it).

    Unfortunately, the viewpoints she seems to stand for will (mis-)lead innumerable people to also buy into biopsychiatry. Innumerable people who would have had the chance to recover fully hadn’t they bought into messages about a chronic brain disease that leaves you no choice but to accept your fate, and pop your pills. For the rest of your life. Innumerable people, most of whom will not be as lucky as Elyn Saks, who, thanks to the drugs’ effects, will not be able to achieve any degree, not to mention that of an academic professor, who will spend their life on disability at some drop-in/day care center, maybe even dependent on assisted housing, and who will die about 25 years earlier than they would have without the drugs and everything else that comes along with a “career” as a “mental patient”.

    Just because Elyn Saks – so far – has been one lucky bastard, this doesn’t entitle her to spread a message that more often than not means life-long misery for those who buy into it. Especially not since she has no substantial evidence to support her viewpoints as psychiatry’s own research literature says quite the opposite of what she advocates for.

    The massive propaganda in favor of Elyn Saks’ viewpoints everywhere considered, I personally cheer for every voice out there, that has the bravery to question these viewpoints, and present different ones.

    • Bravo, Marian! For every person who may have later felt grateful about being forcibly treated, there are other people who were forcibly treated, and who feel this forced treatment constituted a gross violation of their civil liberties and their human rights. Not only that, but when you consider that much of this treatment involves harmful practices of dubious medical value, it becomes even more inexcuseable. Doctors have better things to do than to do physical damage to their patients in the name of medicine, and then to turn around, and to claim this damage healing. I’d like to see in the future more alternatives to conventional psychiatry established where some of those better things doctors engaged in could be treatment practices that didn’t involve the harming of patients.

  12. I agree, mindfreedomvirginia, that it’s unlikely pharmaceutical companies will ever come around. After all, they’re making huge (really obscene) profits, and right now – well, this is just my opinion, but I think most of them are pretty much the embodiment of evil. And I really can’t overstate that. That’s based on a lot of reading and evidence.

    On the other hand, there are individuals working for pharmaceutical companies who MIGHT change their minds, and in fact, there seem to be more and more individual researchers who see these companies’ practices and go public with their criticisms. Some of the information we have on these companies’ unethical, misleading and (my opinion) EVIL practices has come from these people.

    I’m still learning. Thanks to everybody for helping me learn more. I just want to make sure more people, like me, get a chance to hear this message.

  13. I’ve only skimmed the interview and the comments above this one.

    I am SO anti – psychiatry but hopefully in a sensible way. I understand that people can be psychotic and sometimes dangerously out of control. In a situation like this they should be arrested or in some way safely held without there ever being the suggestion made that they are mentally ill in the medical sense.

    If a person is experiencing symptoms of psychosis and is bothered by it they should be able to get help without the fear of being diagnosed, drugged or detained.

    Over time this would reduce the currently increasing incidence of disturbing behaviors which are largely caused by psych drugs and the implications of diagnosis.

    Elyn Saks’ profession would probably be, by her own admission, 99% of what she feels validates her as a person. She is not going to give that up. She says that she is largely motivated by shame. So she has selected herself as a “poster” person and by virtue of her position does nothing more than campaign, probably quite effectively, to maintain the myth of mental illness.

    Rod Jackson (search words: psychiatrist Junction )

    • Some people are SO psychiatry in a senseless way that anything else is refreshing. There are other ways, all we have to do is utilize them. As for people being ‘out of control’, sometimes such things can take care of themselves, given support, without the kind of interventions you seem to be indicating, violence being the exception rather than the rule.

      Elyn Saks is a law professor. I can’t say that she is alone in selecting herself as a “poster” person as you put it, but she has had to sweat a little I imagine to make it to the place where she is at. I just wonder about how effective a teacher she can be if she is ‘campaign’ing ‘to maintain the myth of mental illness.’ One thing I can say for certain is that the mental health system has made mistakes, and I don’t get the idea her main concern is securing justice for the victims of those mistakes.

      • Hi mfv, I don’t think we disagree about too much. Here in Australia the mental health system is strictly coercive. Even a “voluntary” patient treated by the state can be made involuntary for any reason that suits the system. Even a patient of a private psychiatrist is likely to be sectioned for no good reason. Here in Australia if a new mother kills herself and/or her child, 40 or 50 new mothers being treated for “PND” find themselves locked up.

        So I say that the system is wrong. To say that the system makes mistakes is to suggest that the system is right. The system is the mistake.

  14. Rod, I agree with you when you say that the system is wrong. Mistake maybe, accident, definately not. Many people seem to be in favor of human wrongs in the name of medicine. Many of these people assume that some people know what’s best for other people better than those people know themselves. Many of those people move within this same wrong system. I imagine they would strongly disagree with us.

  15. Thanks for a great blog its nice to find people who understand something about the reality of psychiatry, I am anti coercive psychiatry and don’t like having someone elses opinion shoved down my throat, so far the only people i’ve come accross that can literally shove their opinion down your throat are criminals and psychiatrists. I have been labelled as paranoid schizophrenic, involuntarily committed, forced drugging and mocked by people, I don’t take any medication and have extricated myself from the mental health system as soon as I could.I accept what happened to me with humility and believe even this has happened for my own good, I actually see it as a comical satire and psychiatrists are the biggest clowns. Ive learned to stay calm when i am slandered and that in time the slanderer will be found to have the very problem they were accusing there victim of having. I lost a lifelong dream which i was totally capable of achieving, due to my forced commitment, I disagreed with the psychiatrists from the start and still do today. The drugs I was forced onto have probably done some long term damage. An analogy of my situation would go like this : My inability to conform to psychiatrys medical model bias idea of normal can be equated with someone who hasn’t learned to speak french, now how do I learn to speak french? Do I drug them and keep them in isolation until they learn to speak french? or do I teach them how to speak the language? I think we know what a psychiatrists approach to this is. I am a teachable person and highly capable and I did my best to get out of their clutches and this wasn’t good enough for them as a good person I can only say that the shame is on them. When I asked them what I was doing wrong the reply was thats for you to figure out and was sent back to my room. What kind of therapy is this? A psychiatrists opinion means nothing more to me then an agony auntie with a page in a magazine. They are truly some of the most foul creatures that were ever created and I am eagerly awaiting judgement day where the truth will be revealed.

    • Thanks for the kind words, Jonathan. It sounds like you’ve made a good move in extricating yourself from the mental health/illness system. I don’t think I’d be alive today if I’d been moved by what my psychiatrist told me. You know the rap, “You have a serious mental illness. You will need to take drugs for the rest of your life, the way a diabetic takes insulin, or else you are likely to be rehospitalized (deteriorate).” I’ve had enough friends who listened to the same rap from a different psychiatrist, and these same friends are “worm’s meat” now. I value life. I wouldn’t want my life cut short by 20 + years under any circumstances if I could help it. We have a word for cutting short people’s life in such a fashion, and that word is homicide. We talk about toxicity, well, toxic is poison. You give a person a psychiatric drug, and you’re giving that person poison, albeit slow acting, but poison nonetheless. You poison a person, and you’ve commited homicide. Psychiatrists, by over-prescribing psychiatric drugs, are poisoning people, and therefore they are guilty of homicide. There is an organization, I don’t know if you’ve heard of it, that supports a person’s freedom of choice when it comes to the taking of psychiatric drugs, and that is also against coercive mis/treatments (assault, etc.). This organization is MindFreedom International. I would encourage any psychiatric survivor who is serious about protecting him or herself from the present oppressive and harmful psychiatric system to join this organization. Alone, one makes an easy target, together, we can change the world.

  16. Hola! I’ve been reading your website for a long time now and finally got the courage to go ahead and give you a shout out from New Caney Tx! Just wanted to mention keep up the excellent job!

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