Recovery from “schizophrenia” and other “psychotic disorders”

An interview with me on “Madness Radio” can be found at
http://freedom-center.org/madness-radio-cognitive-therapy-ron-unger I talk about why I got interested in psychosis, mainly because of my own experiences as a young man that it seemed to me were understandable yet not likely to be understood by our current mental health system. Then I talk about cognitive therapy for psychosis and why I think it is a helpful and needed addition to the mental health field.

Download episode file directly:
http://freedom-center.org/audio/download/384/MadnessRadio-2008-07CognitiveTherapyRonUnger.mp3

Hugh Massengil videod part of a seminar I did, and posted it to YouTube. I’m discussing the relationship between cognitive therapy for psychosis and medications, and then talking a little about “what is psychosis” and the continuum between everyday errors and “psychosis.” If you want to check it out, it’s available at http://www.youtube.com/watch?v=TFjBnScM2Bk

Recently a couple people I know have put their recovery stories on the web. One is my friend Hugh Massengil, who got his story put on an official state website, even though his story suggests mental health treatment is almost completely off track, at least in its standard form. He is on a committee about increasing wellness among those with mental health diagnoses (very important given data that such people typically die 25 years earlier than average, often due to conditions that are aggravated by medication.) His story illustrates that wellness often is a result of successfully breaking away from traditional “treatment.” You can access his story at http://www.oregon.gov/DHS/mentalhealth/wellness/success.shtml

Another is the story of Oryx Cohen, who is one of the leaders at the Freedom Center http://www.freedom-center.org/ You can access Oryx’s story at http://www.familymentalhealthrecovery.org/2008TorontoRecoveryConf/TorontoRecovery08-OCohenCrashCourseWithPsychiatry.doc It’s a great read, going from his attempt to get his car to fly on the freeway (not very successful) to his attempt to get off psychiatric medications and have a good life (much more successful, though not without difficulty and one big slipup.)

Finally, I’d suggest checking out the video at http://bipolarblast.wordpress.com/2008/06/28/acute-psychosis-in-mania-and-schizophrenia/ It’s an overview of the perspective of psychosis as all about reorganizing the mind, as a positive process if the person gets supported in working through it in a good way. The video is well done and worth the time you will take watching it!

A consumer advisory council in our county has asked our local mental health managed care company to create a policy against having professionals give consumers disempowering misinformation, and asking prescibers to let consumers know that help is available in getting off medications as safely as possible, should the consumer request this. This has stirred up some debate, and the managed care company has attempted to “punt” by deciding to do a survey instead, to see how much of a problem there may be with the issues the consumer advisory council brought up. Below is my argument as to why “just doing a survey” at this point is not an adequate response. I”m seeking to publicize what we are doing in this county because I hope to see other people in other parts of the country also demand change from the mental health system, and I think if we share language and ideas about doing this, we may be able to find the best ways of leveraging some changes.

A survey, if done well, might be a helpful thing. However, the current situation appears somewhat analogous to one where a mental health system had no policy against clients being sexually harassed, then when some clients complained of being harassed, the system responded by planning a survey to see how common sexual harassment was (a survey that might take a year to complete) while still having no policy in place saying that sexual harassment was wrong.

The consumer council has raised some issues which are no less critical than an issue like sexual harassment.
- When consumers are misinformed about the nature of mental and emotional problems, in ways that reduce realistic hopes, the result is increased disability. When hope is removed, people don’t try, and not trying is disabling. (As some consumer organizations have put it, an untrue disempowering belief can “ruin a life as surely as any bullet.”)
- Long term outcome studies show that many consumers are able to do well once they get off psychiatric medications. But when consumers don’t know that help is available in getting off psychiatric medications, or when professionals refuse to offer such help, consumers may needlessly stay on medications, suffering dangerous “side” effects and possibly early death. (While it is possible that some other consumers may do better if they stay on medications, the mental health system does not have the right to trap a group of consumers on medications just because some members of that group may be better off if they stay on medications. This should be a personal choice.)

Matters involving mental health system imposed disability and possibly death are much too critical to wait for survey results before taking a stand.

A survey could be helpful in deciding what needs to be done to implement a policy or guideline, but really has no bearing on whether or not there should be a policy or guideline. Arguments against forming a policy or guidelines now have suggested either that no such policy is necessary, and/or that professionals would be insulted by such a policy. I don’t believe either of these arguments stand. We have policies against sexual harassment even when we believe our coworkers would not do such a thing: stating the obvious does no harm, and it formalizes our ethical standards. If it turns out that people are in opposition to something like a policy against sexual harassment, and if people oppose efforts to limit sexual behavior, that suggests the policy is even more important. It can’t be both ways: the policy can’t be both unnecessary, and something that will stir up real opposition.

I believe professionals have no more right to put someone on medication and then not offer to help them get off when requested, than does a physician have the right to install a shunt in someone and then refuse to remove it if the person changes his/her mind about its desirability. And it is obvious that professionals have no right to provide disempowering misinformation. We have not heard any good arguments against the policies or guidelines that have been proposed, and the need to avoid mental health system imposed disability and/or death is a very strong argument for the proposed changes. Please take action now to address this issue. Thank you.

OK, some input into what might be good survey questions:

Has any mental health professional ever told you that you were definitely going to be mentally ill for the rest of your life, or that your illness was definitely the result of a genetic predisposition or definitely the result of a chemical imbalance or brain disease? (This question could also be put in the form of a checklist, where the consumer could check each item he/she had been told by a professional. One other statements that might be included in such a checklist is “you will definitely relapse if you discontinue your medication.”)

Do you believe that the person who prescribes your psychiatric medication(s) would be willing to assist you in reducing or getting off those medications in the safest way possible, even if he or she thought your request to reduce or get off the medication was not a good idea?

Have you ever experienced a medication “side effect” about which you had not been warned? What was the medication, and what was the “side effect”.

Have you ever been told that medication was the only possible effective treatment for your diagnosis? If so, what was the diagnosis?

Below is a letter I wrote to Daniel Fisher, director of the National Empowerment Center (NEC). NEC has done a lot of good work, but I believe they are allowing a lot of their effectiveness to be compromised by allowing excessively watered down definitions of mental health “recovery” to be considered acceptable.

From the letter:

> One thing I am troubled by is defining “recovery” as possibly still requiring medications and/or therapy. I see this as radically diminishing expectations for recovery. For example, at our county mental health department, clinicians are talking about people being “recovered” when they no longer need case managers to survive in the community and when they are still on multiple kinds of heavy duty and quite dangerous medications, as long as they can go get those medications from their primary care doctors in the community. Of course, they still need their mental health diagnosis to qualify for their prescriptions, yet the system can wash its hands and say the people are “recovered.”

> I get your point that many people in the community use medications and/or therapy yet don’t see themselves as “mentally ill.” Of course, you and I don’t think anyone should see themselves as “mentally ill” so I certainly am not advocating that everyone taking medications see themselves as mentally ill! However, these people are distressed enough to see a need for mental health system support, and I think we should define full recovery as meaning no longer needing such support, period. (One still might need such support at some point in the future, but that is true for any human being.) This would be more consistent with a common sense definition of full recovery, as we might use that term for any other condition or problem.
>
> It would make sense to talk about degrees of recovery, and to talk about what part of recovery it makes sense to focus on first. Certainly the overall focus should be on quality of life and getting a meaningful life. If a person has a massive physical injury that impairs ability to walk, the most important thing is to become mobile again in the community in some form or another. But a medical system that told a person they were “fully recovered” after they were getting around town in a wheelchair, even while the possibility existed that the person would become able to walk again if given competent assistance, would rightfully be called deceitful and incompetent. I’m afraid that when we allow “full recovery” to be defined as attained while the person still is seen as requiring dangerous medications, we become accomplices in just such a deceit.
>
> In your “three circles” diagram, there is some implication of degrees of recovery. All the way over to the left is where people are seriously impaired, in the middle lesser impairment, on the right, not impaired. When people move from the left to the middle, they may still require some kind of treatment, but they have much less impairment. While that is a degree of recovery, it is not full recovery: people should be aware there are further degrees of recovery that are possible, or in your diagram, getting all the way over to the right.
>
> I know there is pressure from people who still rely on medications to have the definition of full recovery include them. And some people who are much more deeply dependent on the mental health system also want to see themselves as recovered - for example I have a brother who still takes large doses of Clozaril, lives in a foster home, and spends most of his days in a mental health “clubhouse” and likes to see himself as “recovered.” (The mental health professionals who deal with him are happy to collaborate in this definition of “recovery”, as it means they don’t have to do anything different or provide any additional kinds of assistance.) I don’t slight the progress my brother has made, but I also don’t want him to think he has recovered as far as he can go. (With my encouragement, he has been working with his prescriber to gradually lessen the dose of Clozaril, so he is still moving forward.) We can really honor the degrees of recovery people have made, while still noticing that further recovery is possible for them. We can honor people’s progress toward recovery, without dumbing down our definition of “full recovery” to mean less than recovering to the extent that one has a full life without further need for treatment.
>
> I know it would be a major move for the National Empowerment Center to modify its definition of full recovery to mean being able to live a full life in the community with no ongoing mental health system support, but I think it is a move that is critically necessary. Dan, you have made just this kind of recovery, and I think, especially with the data out there about how medications are shortening the life span of so many people, we need to be offering hope that this full recovery is possible. That message will be clearly conveyed only when we make sure the words “full recovery” are taken to mean having a full life while no longer needing ongoing treatment. Thanks for your consideration of this critical topic!
>
> Ron Unger LCSW

While “talking with voices in your head” is many people’s idea of insanity, a different perspective is that mental problems come more from either fighting too much with the voices or from giving in to them too easily.  From this other perspective, the ideal is to actually be curious about the voices and talk to them in ways that get to the bottom of what is going on.  You can read more about this kind of approach at

http://www.intervoiceonline.org/2006/12/6/talking-with-voices-by-dirk-corstens-and-rufus-may and at

http://www.en.transformationalpsychology.com/index.php?cmd=page&id=2676

In an earlier post, I mentioned my friend Chuck Areford wrote a column in our local paper severely criticizing our reliance on the long-term use of antipsychotics, which appears to be dramatically worsening death rates among those treated for “serious mental disorders.”  After a psychiatrist wrote a contrary column in which he tried to discredit Chuck as a well meaning but misinformed “nonmedical” person, I and a few others were motivated to write a response defending Chuck and his assertions.  As part of this effort, we posted a lot of background information backing up our assertions to the web.  You can read everything we got in the newspaper, and the references for it, at http://www.mindfreedom.org/rg

This is an outline I recently sketched out, see if it makes sense to you.  I do think we need a way to fit all these pieces together….. 

In a traumatic situation, life or death may depend on one thing, and focus on doing that thing right becomes intense. Trauma makes people “care too much” for regular life, where no one thing matters so much. Through exposure to trauma, people may learn to draw hard, absolute lines, or to actively shut out part of their psyche which seems too dangerous to acknowledge during the traumatic events (such as a part that acknowledges softness.)

Spirituality is often associated with healing and with wholeness, but it is also associated with the journey toward healing and wholeness. Mistakes on this journey can happen to anyone, but in particular for a person who has been traumatized, aspects of a positive breakthrough toward healing and wholeness can become overly valued, resulting in actually going further out of balance. A positive breakthrough experience can, like trauma on the other end, make certain things be valued too much for regular life, and can get a person to draw hard, absolute lines, or shut out parts of the psyche which appear contrary to the spiritual breakthrough.

Psychosis typically emerges out of a pattern of self-preoccupation with inner divisions, where a person cares too much about feelings, thoughts, and perceptions, which then take on a semblance of troubling “otherness” and of “reality” rather than just mental events. “Intrusions” from parts of the psyche which have been rejected, or which violate the “hard lines” one has drawn about acceptable mental content, are experienced as uncontrollable, at the same time they “must” be controlled. Since the source of them cannot be the self, bizarre explanations of their origins start to seem acceptable. (The resulting “hallucinations” and “delusions” are termed “positive symptoms.”) Typically, the harder a person tries to control such things, the more out of control they become. This can result in demoralization and an across the board giving up, usually seen as “negative symptoms.”

Neuroleptics can be described as “indifference in a pill” as inducing indifference appears to be their positive function. Since positive symptoms result from “caring too much” the neuroleptics are often effective in reducing them at least somewhat. They can also have some effect on negative symptoms, since a person no longer so demoralized by the vicious circles of “caring too much” may find it possible to start caring about things again, in a more balance way, with whatever capacity to care they have remaining after the drug effects. However, for many people there will be either no effect on the overall level of “negative symptoms” or they will actually get worse due to drug induced indifference.

A more targeted intervention would focus primarily on teaching a person to learn targeted indifference, teaching a person to shift focus away from controlling thoughts, feelings, and perceptions, and increased focus on and caring about acting based on one’s values. (This is the essence of Acceptance and Commitment Therapy, an approach found effective with psychosis. Other kinds of psychotherapy also include this focus in less explicit ways.) Neuroleptics would be seen as a backup intervention, useful only when other interventions could not be effective quickly enough, and then with a plan to phase them out as soon as the person themselves learns to avoid “caring too much” about mental events etc.

Today, the Register Guard newspaper in Eugene Oregon published the following editorial, which calls for radical change in the long term treatment of mental problems such as those labeled “schizophrenia”.  Chuck Areford, the mental health worker who wrote it, makes some good points.  You can access it at http://www.registerguard.com/csp/cms/sites/dt.cms.support.viewStory.cls?cid=78024&sid=5&fid=1