Recovery from "schizophrenia" and other "psychotic disorders"

At least here and there, mental health authorities are recognizing that it is a problem that people in the public mental health system are dying 25 years earlier than the average person, and they are starting to talk about it. (For more information on these death rates, see http://healingattention.org/presentations/unger07.ppt.) But while they are often willing to talk about how to reduce death by improving medical care or reducing smoking, they are often much less likely to discuss the role of neuroleptic (”anti-psychotic”) medication in causing many of the deaths, or how to reduce that impact.

Below is a list of suggestions that if followed could really reduce deaths from neuroleptics, by attempting as much as possible to safely reduce their use, and substitute alternatives wherever possible. You might take this list to your local mental health administrator……

Let consumers know that we want to collaborate with them in minimizing the use of neuroleptics. Let them know that our success in this will partly depend on their willingness to use alternatives and to learn more about other ways of managing their issues.

Make sure consumers are fully informed about the risks to their health from taking neuroleptics, so they are more likely to be interested in working to reduce their use, and so they don’t end up taking these risks without informed consent.

Provide groups to educate consumers in how to shift to relying more on alternatives to medications, so they will experience less need for medications.

Provide written material that educates consumers on how to shift to relying more on alternatives to medications.

Attempt to identify types of clients who are currently getting started on neuroleptics, but where alternative approaches that are available in the community might work if tried. Figure out how to encourage trying these alternatives before neuroleptics are tried.

Identify clients who may have needed a certain level of neuroleptics in the past, but who now might possibly do well with less or no neuroleptics. Work out with them a process of weaning off, which would include assistance in handling withdrawal reactions and with gradually shifting to alternate forms of coping. Have a good relapse plan in place which includes the possibility of resuming higher levels of medication as one option, if necessary.

Specifically avoid using forms of psychoeducation that imply that certain forms of mental problems can only be handled by medication, as these discourage attempts to handle the problems in other ways. Instead, always frame medication as a possibly temporary measure, which could become unnecessary in the future if other forms of coping become more successful.

Make sure consumers are informed about the likelihood of withdrawal effects when neuroleptics are discontinued abruptly (the fact that relapse is 3-5 times more likely in abrupt withdrawal.) This will help consumers avoid mistaking withdrawal effects for a need to constantly maintain medication.

Make sure alternative treatments are as available in the community as possible. For example, make sure that clinicians are available who are trained in psychological approaches to psychosis, so they don’t just see “more medication” as the only option when a client experiences a psychotic symptom.

Rather than just focus on the risk to clients of reducing or getting off neuroleptic medications, acknowledge that risks of reducing or getting off must be weighed against the possibly life threatening consequences of staying on the medications, and acknowledge that the balance of risk is different for each person, and varies as well over time. For example, trying a reduction may be too risky at one point in time, but may make good sense later.

Too often, our mental health systems are more oriented toward “drug and keep out of trouble” than they are toward recovery (even when they say they are about recovery!)

It could be different. In Lane County Oregon, activists, especially consumers, have organized to propose guidelines directing the mental health system to practice with recovery in mind from the beginning. This would mean professionals would have to avoid presenting biological speculations which are likely to make a consumer feel they have a difference which is beyond their control (such as, “you have an illness of the brain” or “you have a biochemilcal imbalance.”) Medications would be seen as only one tool among many, accurate information about benefits and risks would be available, and help would be available in getting off medications as well as getting onto them. The consumer voice and consumer choice would be considered at each level of mental health treatment, to reduce trauma and increase the chances that treatment offered would match individual needs.

You can take a look at the guidelines we have drafted, at lane-guidelines-revised If you like these guidelines, feel free to modify them and propose them to your local mental health system!

When people dream, they are “completely out of touch with reality” and they take totally seriously the most fantastic and improbable perceptions. When people are psychotic, they do pretty much the same thing. Could there be a connection? Actually there seem to be many connections, some of which are discussed at http://www.hgi.org.uk/archive/psychosis.htm.

Dreaming and creativity are highly associated. I know some people who have questioned the notion that psychosis (considered an illness) could be linked to creativity (considered one of the highest human functions) but the evidence just keeps getting stronger. Just this morning, I was reading in one book that in testing brain differences, physiological differences, and cognitive differences, the very strongest predictor of a schizophrenia diagnosis was being low in a thing called “latent inhibition” which is the ability to screen things out of awareness that were previously tagged as irrelevant. Most of the places I have seen this discussed, it is looked at as nothing but a “brain defect” that predisposes a person to psychosis. But is being low in latent inhibition always a bad thing? It turns out not: highly creative people are also low in latent inhibition! Of course, those who are successfully creative have learned how to handle this difference.

More on this at http://blogs.psychologytoday.com/blog/beautiful-minds/200903/schizophrenic-thought-madness-or-potential-genius or in more detail at http://pantheon.yale.edu/~sbk22/Scott_Barry_Kaufman/Publications_files/Kaufman%20%282009%29.pdf

Before most of my blog vanished into cyberspace, I had posted a link to a MindFreedom document that compares the myths that people are told about “mental illness” with what people would hear if they were told the truth. You can access this document at http://www.mindfreedom.org/truth/mental-health-myths

Will Hall was recently interviewed about Mad Pride in Newsweek, see http://www.newsweek.com/id/195694

In response to this article, a mental health worker I know questioned how people could say that madness is just a “difference” and not an illness, and yet also claim that people who are mad deserve disability payments. In response, I wrote the following, which attempts to sort out the connections between mad pride and gay pride, and how both might relate to the topic of “disability.”

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I agree that the issue of what is just a difference, that one can realistically be proud of, and what is a disability, is an interesting one.

A person may be blind, and be to some extent disabled by that, and yet feel that one’s life has been enriched and not deprived overall as a result of the experience. One might need help from others at various times due to being blind, yet also have unique gifts and perspectives to offer to others as a result on one’s blindness.

Mental differences are even more complex.

Years ago, if a young man came into a psychiatrist’s office, reporting that he could not work because he was distracted by overwhelming anxiety and suicidal thoughts prompted by strong feelings of attraction to other men, his affliction would be considered to be his homosexuality and efforts would be made to turn him straight so he could be happy and not disabled. These efforts would likely have just made things worse. The same young man, coming into a psychiatrist’s office now, would hopefully be told he could learn to accept himself as different than others, that this difference was not itself an illness, and that once he did accept it and learn to live successfully with it he would not be ill at all. The young guy might even be referred to people who will teach him to take pride in his differences, and to find others who will appreciate him just for those differences. (He will still make a lousy husband for your daughter, and to that extent will be disabled, but on the other hand he may make a great boyfriend for your gay nephew, so overall there is no disability.)

These days, if a person comes into a psychiatrist’s office and reports that he or she is distressed due to hearing voices and having various kinds of strange experiences and perspectives, he or she is likely to be told that all of this is due to the person’s mental illness, and the psychiatrist will attempt to change it all as much as possible, to make the person “normal.” Yet, research on the general population shows that many people are living fine out in the world who regularly hear voices and have strange beliefs and experiences. Somehow, they manage all this without a lot of distress or disability. What “mad pride” is about is helping people with strange experiences and perspectives to make the shift from being distressed and disabled by their differences, to learning how to accept and enjoy them, and even see them as having value.

The Icarus Project, in which Will Hall is active, speaks of “negotiating the space between brilliance and madness.” So there is an implication that the person has to learn how to manage his or her “dangerous gifts.” With appropriate management skills, there is no longer disability.

What we really have to learn from the mad pride movement is similar to what we had to learn from gay pride: that it is to a great extent the person’s and society’s ignorance of what to do with differences, and not the differences themselves, that are the problem. People can still be disabled when they haven’t found out how to manage their differences, and so they really do deserve disability at that point, but they can also potentially learn how to navigate out of the disability and perhaps become something amazing. Or at least have an enjoyable life, while still being “different.” This is most likely to happen when both the person and the helpers see the possibility of it happening and have some kind of roadmap of how to get there.

So there’s a beginning of an answer. I know it’s hard for those who see “schizophrenia” as nothing but a “biological illness” to consider some of these possibilities, but I think if we really keep studying all the links between creativity and madness, and listen to people who have been there like Will, we will start to get it.

I was recently reviewing an article, (Nettle 2006) (see the abstract below) that makes some really interesting observations that pertain to the relationship between psychosis and creativity.

The author explores how “divergent thinking” (which I believe might also be characterized as a loosening of associations) is commonly experienced by poets and artists, while “convergent thinking” is more seen in mathematical types, (which I believe could also be seen as a tightening of associations.) Divergent thinking leads to having more unusual experiences such as are seen among both artistic types and those diagnosed as psychotic, while convergent thinking is associated with experiences on the negative symptom dimension, which are more seen amongst both mathematicians and those with autism.
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I think the author misses a point though when he associates convergent thinking with autism but not “schizophrenia.” Overly convergent thinking is definitely seen in people diagnosed with schizophrenia, it is often observed in autistic type reactions, and certainly fits with the negative symptom dimension commonly seen in people given this diagnosis.

One way the interplay of excessively divergent and then excessively convergent thinking is seen in people diagnosed with “schizophrenia” is in the way a person makes associations in response to a stimulus. The tendency is to have a much greater than average initial associations, which then are overwhelming, lead to a kind of “collapse” into having a smaller than average number of associations.

Another way this interplay is observed has to do with metaphor. People who tend to get diagnosed with schizophrenia use metaphor wildly, just as the mind does in dreams, but then also typically are not very good at understanding metaphors, much as people with autism fail to get them (this is the excessively convergent thinking.)

I believe this all has to do with a sort of underlying “bipolarity” to the processes common to psychosis. It’s kind of a chicken and egg thing. It could start with a person being in a mental rut, leading to divergent thinking in an attempt to get out of it, that then leads to some kind of trouble followed by an over-correction to overly convergent thinking, which deepens the rut, etc. Or it could start at the other end, with something inspiring the person into overly divergent thinking, which leads to trouble and etc.

At any rate, I think if we get better at understanding the parallels between human creative process, both divergent and convergent, we will be much better at helping people tease out the possible meaning in their psychotic experiences, both on the positive and negative dimension, while also helping them avoid the kind of over-corrections that keeps them cycling through “bipolar” extremes rather than finding a balance.

If someone wants a copy of this article, I can email it to you.

Ron Unger

Nettle, D. (2006). “Schizotypy and mental health amongst poets, visual artists, and mathematicians.” Journal of Research in Personality 40(6): 876-890.
Many researchers have found evidence of an association between creativity and the predisposition to mental illness. However, a number of questions remain unanswered. First, it is not clear whether healthy creatives have a milder loading on schizotypal traits than people who suffer serious psychopathology, or whether they have an equal loading, but other mediating characteristics. Second, most of the existing research has concentrated on artistic creativity, and the position of other creative domains is not yet clear. The present study compares schizotypy profiles using the O-LIFE inventory in a large sample of poets, artists, mathematicians, the general population, and psychiatric patients. Poets and
artists have levels of unusual experiences that are higher than controls, and as high as schizophrenia
patients. However, they are relatively low on the dimension of introvertive anhedonia. Mathematicians
are lower than controls on unusual experiences. The results suggest that artistic creatives and psychiatric
patients share a tendency to unusual ideas and experiences, but creative groups are distinguished
by the absence of anhedonia and avolition. Moreover, different domains of creativity require different
cognitive profiles, with poetry and art associated with divergent thinking, schizophrenia and affective
disorder, and mathematics associated with convergent thinking and autism.

A really great article, that explains the consequences of being indoctrinated into a biological model of “illness” versus the results of being understood as a human being dealing with life issues and conflicts, is available at http://bipolarblast.wordpress.com/2009/04/26/nami-parents-false-hope/ By Ty Colbert, this article also explains how children can be traumatized despite being raised in good homes, and how good parents, fed bad ideas by biologically oriented psychiatrists and by NAMI, can inadvertently cause further trauma once people are “diagnosed.”

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.