I’m pasting in below, with permission of the author, a summary of some sources of first person accounts of experience with mental health issues and with recovery. These are the stories, too often suppressed, that could help guide us into a very different sort of mental health system:
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The Value of First-Person Narratives in Mental Disorders
Brian Koehler PhD
New York University and City University of New York

Gail Hornstein (2009), in her humanistic, poignant and scholarly volume
“Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness,”
underscored the importance of “first-person accounts” of mental disorders.
She believes that “madness” may be more about code than chemistry.
Subjective narratives, linked to history and life events, are essential to
the understanding of such symptoms as delusions, hallucinations, etc. and
their treatment. Physician Andrew Weil recommended to the US NIH that a
“National Registry of Healing” be established classified by diseases and
extensively cross-referenced, so that patients (and doctors) can have
access to narratives of recovery and healing.

The following are websites devoted to the collection of first-person
accounts, i.e., oral histories of persons struggling with psychosis and
the systems charged with treating them.

In the United States:

MindFreedom International: [ http://www.mindfreedom.org
]www.mindfreedom.org

New York State Archives: [ http://www.nysarchives.org ]www.nysarchives.org

Alaska Mental Health Consumer Web: [ http://www.akmhcweb.org
]www.akmhcweb.org

M-Power in Massachusetts: [ http://www.m-power.org ]www.m-power.org

Freedom Center: [ http://www.freedom-center.org ]www.freedom-center.org

Taped Interviews:

The Mental Health Testimony Project at the British Library contains fifty
taped interviews in which people who spent years in British mental
institutions tell their life stories in their own terms.

Dori Laub’s Fortunoff Video Archive for Holocaust Testimonies at Yale
University- Psychiatrist-psychoanalyst Laub and colleagues identified a
group of patients who had been hospitalized for decades in Israeli mental
institutions. Each patient had traumatic Holocaust experiences that had
not been recognized as connected to their ìchronic schizophrenia.î
Witnessing to these patients narratives led to a reduction in
symptomatology. Laub poignantly wondered: what if the survivors had been
able to tell their stories before they ended up as chronic mental patients?

Patient Art:

The Bethlem Royal Hospital in London has a collection of hundreds of works
of art by persons who have been patients at British psychiatric
institutions

The Prinzhorn Collection: A collection of five thousand paintings,
drawings, textiles and sculptures created by patients in German, Swiss,
and Austrian asylums at the turn of the twentieth century is now located
in its own beautiful museum in Heidelberg, Germany. Hans Prinzhorn, a
psychiatrist and art historian, spent years searching out patients’
creative works. Agnes Richter’s jacket is in this collection. Dated circa
1895, this person who was a patient in a German asylum, stitched her
autobiography into every inch of the jacket she created from her
institutional uniform.

Personally, I have, over the years, collected patient art and narratives
of their lives while working at a state psychiatric hospital in New York.
I have struggled to relate the third person accounts of neuroscience with
the first person accounts of patients themselves, e.g., a sense of social
exclusion and defeat, as well as with the history and culture of the
individual, i.e., establishing a “tri-alogue” between brain, mind and
culture. Gail Hornstein (2009), a champion of the value of subjective
narratives of persons diagnosed with mental illness, proposed:

“First-person accounts of psychological distress serve two powerful
functions-they expose the limits of psychiatryíc explanations and
treatments for mental illness and they offer competing theories and
methods [e.g., phenomenological] that might potentially work better. The
more of these accounts I’ve read [e.g., the journal of Nijinsky]…the
more convinced I’ve become that first-person experience is crucial to
understanding madness and its treatment” (p. xxii).

Brian Koehler wrote that “I like to reassure myself through Winnicott’s maxim-we succeed by failing
our patients-failing them in a way that is tolerable, acknowledged, and of
course, repaired (as the infant researchers, like my old teacher, Beatrice
Beebe, would say-disruption-repair cycles). However, this is not always
the case-countertransference is the best of teachers, but the worst of
masters.”

I think a lot of the problem with how psychotic disorders are conceptualized has to do with mental heal workers not being able to follow this maxim. The dilemma is that if there really is a potential for a client to get better, but yet the client hasn’t been able to find the way to do that and the mental health worker hasn’t been able to show the client how to do that, then that means there is a failure in treatment. We have been inadequate to the task. In order to defend themselves from such charges of inadequacy, mental health workers instead theorize that the client has no potential for true recovery. This means no one has any grounds for criticizing the mental health worker or the treatment – after all, it is doing the best that is possible for such a “chronically ill” client! The problem of course is that the mental health worker and eventually the client are both likely to give up really trying as a result, if they believe this, and opportunities are for recovery are lost.

If we instead notice we have no reason to believe that full recovery is not possible (since others with very similar profiles have made such full recoveries) then we admit that the failure in any particular case may be due to inadequacies in our approach, and we can discuss that with the client and collaborate in reasonably hopeful explorations of other avenues toward recovery. A more humble mental health worker, yet also much more effective treatment, are the likely result.

 I recently read an article on teenagers, brain pruning, and how apparent differences in brain pruning seem to occur in individuals headed toward “schizophrenia.”  Some dots started to connect in my mind, and I sketched out how this might all work; note I’m not seeing the “brain pruning” differences as having a primarily medical explanation.  I like my sketch, partly because it addresses how neuroleptics appear to be part of the solution but actually aggravate the underlying problem (just as they seem to increase the brain pruning or brain shrinkage that was seen early on as part of the problem.)

Anyway, here’s my sketch, it gives a broad overview of my thinking about the problems in psychosis and in the usual sorts of “treatment.”  I’d be curious to hear what you think of it.

Sketching out the role of “significance” in “schizophrenia:”

When people are stressed, they are more likely to think in black and white terms, and to narrow attention to the stressors.  Diversity of thinking is reduced.  (Note that depression has been found to involve thinking slowly, but with a narrow focus, while anxiety involves faster thinking that is also narrow.  See http://www.sciam.com/article.cfm?id=rapid-thinking-makes-people-happy)

It is known than many mental connections are “pruned” away during adolescence, as the brain apparently sorts out which connections are significant and which are not.  It has also been observed that this “pruning” appears to be greater in those who go on to develop “schizophrenia” and that this results in reduced brain volume on average for those who develop this condition.  While this is thought by many to be evidence that schizophrenia is a “brain disease” it could also be that this excess pruning just reflects an excess narrowing of a sense of significance that comes about perhaps as often a reaction to chronic stress. 

Of course, a lot of what earns people a diagnosis of “schizophrenia” is not limits to a sense of significance, but instead seeing significance where others don’t.  This goes along with “jumping to conclusions” and often holding onto conclusions when others think they should be given up.  Or disordered thinking, where so many things are seen as significant that there is no logical order.  One possibility of why this is so could be that the person is trying to fight back against the process of narrowing of significance, by grasping at straws so to speak to find significance, and then is very reluctant to let it go once it is found, because significance has been so hard to come by.  It is this “fighting for significance” that we see as positive symptoms.

Of course, seeing significance in the wrong places can lead the person into more stress, and stress tends to lead to a narrowing of focus as discussed earlier, so the attempted solution backfires.  Lacking insight into the dynamics of the problem however may cause the person to try even harder to come to quick conclusions, to jump at impressions of significance, and to hold onto perceptions of significance even more tightly, just making the whole vicious circle accelerate.

Then the person is diagnosed and becomes the recipient of psychiatric care.  What happens next?  The person is told that his or her perceptions have no significance, they are just an illness, and the person is given neuroleptic or “antipsychotic” medications which are really indifference pills – in other words, they reduce the perception of significance.  This typically results in fewer “positive symptoms” or less jumping to and hanging onto poorly thought out conclusions, but also less spontaneous or original thinking of any kind.  This means that the excess narrowing of a sense of significance that happened early on in the process is just accelerated by the “treatment.”  The medications accelerate the brain shrinkage that had already been a problem.  The accelerated shrinkage of mental connections means the person is even more desperate for a sense of significance, and is even more likely to jump to conclusions or inappropriately hang onto conclusions when that can be accomplished (which makes relapse even more likely when medications are discontinued for example.)

What would work better?  Understanding this whole process, and not being so quick to try and solve one part of the problem in a way that causes other problems.  It has been pointed out that those who have been able to see some significance in their psychotic process are actually more likely to recover.  The trick is to be able to see “some significance” in it, without seeing it as so significant that it is all taken literally.  When we understand thoughts or perceptions as expressing part of the truth, but also being partly wrong or inadequate, then we become curious and open minded in a way that encourages further thought, further mental connections, a broader sense of significance.    

Ultimately, the search for significance is a spiritual search, which is why “schizophrenia” is really about spiritual issues.  Positive symptoms are about trying to find significance, but doing it in too grasping of a manner, leading for example often to definite conclusions where they are not justified.  We need to get out of our mental ruts in order to nurture mental diversity and a broad sense of significance, so there is something quite positive about seeing significance where others do not, as long as we can learn to do it in a non-grasping manner, seeing things as partly or maybe true, keeping an open mind, and noticing the ways in which we do not know – just as mystics have always stressed that we cannot “know” the divine in any fixed way, in any definite form.

Neuroleptics may reduce some of the “grasping” but they just aggravate the underlying problem of lack of significance.  This suggests they should be used very sparingly if at all.  Telling people their psychotic experiences are meaningless is the interpersonal equivalent of a neuroleptic:  it also may make some people give up on their perceptions, but most likely in a way that would aggravate the underlying problem of failing to find significance.  Better might be conversations that opened up the story, that get people to explore both ways that the experiences may be significant and ways they may not be, so that mental connections are made, complex understandings developed, etc.  This could overcome both the problems that come from “grasping” meaning, and those that come from too much loss or letting go of meaning.  Then real recovery becomes possible. 

I think in a narrow sense good therapists try to do this in meetings with clients.  However, we also need to see this happen much more broadly in society:  the acknowledgment that many possible ways of looking at things have some meaning, but they also have limitations, and so encouraging curiosity and connection with other perspectives.  This would help us both integrate “mad” perspectives, as well as those of other cultures.

Note:  In coming up with this sketch, I drew on my own experiences as a young man who had a lot of psychotic or psychotic-like experiences (but never drifted so far that I lost control of my life or got caught up in the mental health system.)  I was able to get out of the vicious circle by finding meaning in my experiences but also learning not to grasp them so tightly that I couldn’t see other perspectives or relate to other people.  And it really helped that just a few other people didn’t shut me out, and did see possible meaning in my experiences.

If you ask most people, they will tell you that schizophrenia is a specific “illness” which causes various “symptoms,” usually some combination of delusional thinking, hallucinations, “disorderly thinking” and demoralization.  They will usually say that this “illness” is biological and must be treated with medications.

The alternative view is that people get labeled with “schizophrenia when they react to life and life’s problems in certain troubled and troubling ways.  In this view, there is no “illness,” just a human reaction, though it may cause lots of problems! 

If it is a human reaction, then people can learn to not react in that way, though it is difficult to sort it all out.  Many people could recover relatively quickly without medication if given decent support (and have been able to do so in a number of experimental situations when such support was provided.) Most professionals will also tell you that schizophrenia lasts a long time; though if you read in the fine print you will find the only way they insure that no one gets labeled with schizophrenia for a short time is to have a rule than anyone with the same “symptoms” for less than 6 months gets a different label!  Actual research data shows that some people recover quickly, others slowly, and others not at all.  This does not imply that there is necessarily anyone who cannot recover, only that with current methods of treatment or “helping” only some are managing to recover.  The goal of the mental health system should be to find a way to insure that everyone recovers.

(Note, this is a very old post, and at least many of the problems reported with the EAST program no longer exist, as they have been open to making some changes.  This post however does still describe problems that exist with many suppposedly “progressive” programs which really still follow an excessively narrow and inaccurate “medical model.”)

The following exerpt is part of an email I wrote to Kathy Savicki, the director of an early intervention in psychosis program in Oregon called EAST.  (You can find out more about EAST by checking out www.eastcommunity.org.)  While this program can be praised for at least bringing up the issue of recovery, it also apparently suffers from very serious flaws due to the way it pushed a biological explanation for psychosis – both common sense and research tell us that when people believe their mental problems are biological, they feel less able to do anything about them.  Since empowerment is a key factor in recovery, and since biological theories are highly speculative, then biological theories should never be presented as fact.  “I found some things about your program that I liked very much, but also some apparent problems which I would like to discuss with you.  Since you have taken a forward looking approach in being involved in new programs, I am hoping you are open to hearing different and probably controversial ideas, even if critical of some aspects of your program!

The Merrian-Webster online dictionary defines psychosis as “fundamental derangement of the mind (as in schizophrenia) characterized by defective or lost contact with reality especially as evidenced by delusions, hallucinations, and disorganized speech and behavior.” The notion that we can distinguish out people who have a defective contact with reality, suggests that there must be others of us who have unflawed contact with reality from which we can judge. But “in reality” we are all imperfect, and have various imperfect degrees of contact with reality, some of us more in contact with some aspects of reality, others more in contact with other aspects. It follows that any attempts to make black and white distinctions as to who is “psychotic” and who is not, are a bit presumptuous. Without being so presumptuous, we may still be able to distinguish when a particular person is having problems due to his or her failure to be in touch with some aspect of reality, while staying open to the possibility that this same person may be more in touch with some aspect of reality than are the people attempting to help him or her. This less black and white version of “psychosis” is probably more realistic, and is more conducive to recovery, since it recognizes that we are all human with imperfect notions of “reality.”

While anti-psychotic, or more properly “neuroleptic” medications often appear to be helpful in the short term, they have never been proven to be helpful to long term recovery. In fact, there are lots of reasons to suspect that they actually make recovery less likely. There is the fact that overall recovery rates have gone down since they were introduced; the fact that recovery rates are about twice as good in developing countries where they are used less often; and the fact that in most long term studies, the people doing best have mostly all quit using medications. Now, an article is available that shows how even in the early days of the use of these medications, there were a few long term studies that showed that people who were given placebo did better than those given medication, when observed 1 year later! Yet, the researchers refused to see the results of their own studies, and failed to alert professionals and the public to this fact. You can read this article at http://psychrights.org/Research/Digest/Effective/MIrwinSxReversalNoDrugs.pdf

You might want to check out the psychrights website generally, it is loaded with articles on both the hazards of mental health treatment as usual, and helpful alternatives: PsychRights