Recovery from "schizophrenia" and other "psychotic disorders"

On Monday, July 27, at 4:10 PM, I will be interviewed on a show called Northwest Passage on local radio station KLCC. The topic will be the possibility of full recovery from schizophrenia, and in particular I will be discussing an excellent documentary about that, Take These Broken Wings which will be shown in Eugene, sponsored by MindFreedom, the next day. More on that showing here.

It seems that having a public film showing is a pretty good way to get publicity for an issue. First, it tends to attract a good audience, and one can have a discussion afterward. Then, one can get additional media coverage, as the existence of the film showing becomes a reason for local media to focus on the issue. That’s how this radio appearance came about.

Earlier today I was informed by the director of our county mental health agency, where I work only a few hours per week, that I am now officially banned from sending emails to the psychiatrists, unless it concerns a particular client. The reason for this ban? I sent them a list of suggestions about how the agency might work to reduce the high death rate among the mentally ill (see below for the text of the email I sent.) Apparently, the new chief psychiatrist was offended, and decided I was simply too radical to be allowed to speak to the medical staff. So much for willingness to hear different points of view…..

There are some advantages to being censored however, as anyone knows who has ever had a book or movie banned. People start wondering, why did that happen? So the next step (after talking personally to the director about it) will be for me to go public, and question why my suggestions were seen as so radical as to require censorship, and why the county refuses to even allow discussion of alternatives to current forms of treatment, even as people are dying. I’m sure the local newspapers will be open to a column in the editorial section on the subject……

Here’s the text of my email, sent to all the county mental health workers:

LCMH’s program to integrate primary care with mental health care is great as one angle to take on reducing death rates in our clients, and there also has been some focus on shifting to neuroleptics with somewhat less hazardous known side effect profiles for clients who do OK on those other neuroleptics, but I think we need to address much more than that if we are to really have a sufficient impact on minimizing deaths.

A few thoughts on what LCMH might additionally do to reduce deaths caused or partly caused by neuroleptics:

Let consumers know that we want to collaborate with them in safely 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 being exposed to risks from neuroleptics without informed consent. (This means not just telling them once, but making sure they really “get it” about the risks.)

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 and giving them a reasonable chance to work 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 abrubtly (the fact that relapse is 3-5 times more likely in abrubt 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.

All of these steps could be done without really adding new programs, though adding new programs, such as an early intervention program for psychosis that prioritized a non-medication approach, could also be an important part of the solution.

I’d be curious to hear your thoughts about these options and their potential role in reducing death rates…….

Ron Unger

Many people are still convinced that the “scientific” understanding is that if a person is diagnosed with a “mental illness” such as “schizophrenia” then this means they have a genetically determined brain dysfunction that has nothing to do with what happened to the person. Of course, such a view is really about as scientific as the flat earth theory!

If you are trying to communicate with such a person, on bit of suggested reading might be the article described below:
“Childhood trauma and psychosis: Evidence, pathways, and implications”, W Larkin, J Read. J Postgrad Med [serial online] 2008 [cited 2008 Nov 2];54:287-93. Available from: http://www.jpgmonline.com/text.asp?2008/54/4/287/41437 Description of the article: There is currently a growing body of research examining environmental factors in the etiology of psychosis. Much recent interest has focused on the relationship between childhood trauma and the risk of developing psychotic experiences later in life. Numerous studies of psychiatric patients where the majority are diagnosed psychotic indicate that the prevalence of traumatic experiences in this group is high. This body of research now includes many large-scale population-based studies controlling for possible mediating variables, which together provide persuasive evidence of a dose-response association and are indicative of a causal relationship. Several psychological and biological models have been proposed which offer credible accounts of the processes by which trauma may increase risk of psychotic experience. Clinically it is imperative to routinely enquire about traumatic experiences, to respond appropriately and to offer psychosocial treatments to those who report traumatic life events in the context of psychotic experiences.

If the person you are trying to communicate with still denies a possible role of trauma after reading that article, unless he or she comes up with a good point by point refutation of the article, I would get more curious about what are the advantages to the person to believe that trauma has no connection to psychosis and schizophrenia. Because mental health professionals and others who belief themselves “experts” are really no different from people who get called clients in one respect: both groups often believe things for emotional reasons rather than due to real evidence or logic.

Of course, the person you are talking to might just maintain that there is a huge pile of evidence pointing to the existence of brain dysfunction in people who have been diagnosed with schizophrenia – certainly there is evidence of brains operating differently when people are psychotic, but then again, so is there evidence in the cases of people who have been traumatized in general. And there is evidence that at least very frequently, the brains of people with schizophrenia have many structural differences from the average person – but then again, the same turns out to be true for people who have been traumatized, and many of the brain differences show to be the same for both groups.

As for whether or not people end up labeled with schizophrenia due to genetic differences – I think we could really waste our time trying to argue that there is no such thing as a person who is more genetically vulnerable to schizophrenia than another person. More likely, some people are genetically more vulnerable, just as it is also likely that some people are more genetically vulnerable to get PTSD (and studies exist that at least suggest this.) But that doesn’t mean that we know that just because a person fits the diagnostic criteria for PTSD or schizophrenia, that this person has any genetic vulnerability. It could be that life events and trauma hit that person hard enough, for a variety of reasons, to cause the disorder even though the person had no greater than average vulnerability. One thing that doesn’t exist is any evidence to show that there exists a sub-population that is invulnerable to schizophrenia, or to PTSD.

Anyway, I hope this information and these arguments are helpful to any of you who have to communicate with people who are still believers in the exclusively biological theories about mental health difficulties.

If “schizophrenia” and “bipolar disorder” and such are not real “biologically based brain disorders” or “biochemical imbalances” then what does account for the difficult experiences and problems that get people these sorts of labels?

One way of explaining them is as imbalances, though not necessarily “biochemically based” imbalances. (That isn’t to say biochemistry isn’t involved, since as living beings our bodies and brains function through biochemistry.) Instead, the idea is that in responding to life events, some of which may be difficult or overwhelming, our mind can go to extremes of one kind or another, and lose its balance. It can then be difficult, though not impossible, to get back to balance.

Obviously traumatic experience is the most obvious example of this. To get through a traumatic situation, people go to extremes of fight, flight, freeze, and/or submit, in order to survive. The very thing we do to survive may also threaten our wellbeing, so later we might go to an opposite extreme to protect ourselves from the first extreme. Pretty soon, we may feel crazy, and fear that we might be crazy drives us, and often the people around us, to even more extremes. Vicious circles are created.

“Flipping” from one extreme to another is pretty obvious in “bipolar disorder” as people go from very excited to very depressed and lethargic, etc. It isn’t so obvious in “schizophrenia” as the people with these labels often manifest two extremes at once, or they identify as one extreme while fearing persecution by another extreme that manifests as a “voice,” or some other combination. And things get more confused when mental health professionals label extreme versions of normal mental states as pathological, rather than understandable.

I believe the most humanistic way of looking at “mad” mental states is to see them as extreme versions of everyday mental states. When people look at them that way, they can see that they are not so different from other people, and that they do have the option of moderating their extreme states, of finding a middle ground, to come back to the world shared by others.

Of course, it isn’t always as simple as a need to move toward “balance.” Living creatures are not meant to be perfectly balanced; instead, as complexity scientists tell us, life happens “far from equilibrium,” or as a “balance between balance and imbalance.” We are moving systems, and total balance would mean perfect stillness, not a property associated with life! This means that people’s extreme states may also at times have something to contribute, and not just be a problem. So sometimes it is normality that is the problem, and being “more extreme” is actually wise or helpful in a given situation.

I have spent some time mapping out some of the issues people go out of balance around, and identifying what a middle ground might be. I have put many of these issues into a PowerPoint display, which is available here. (Or, if that doesn’t work for you, try here.) I have found it helpful with people to just identify these issues (which are issues we all face) and help people see where they have been going to one extreme or the other, and to help them see they also have the option of trying out the middle ground. Because often when people are “freaked out” they and others around them can’t identify that option.

I think people are healthiest when they see themselves as having options, from the extremes to the middle, and they can pick what best seems to fit a situation. I hope the ideas I am presenting here will help some of you see more options, for yourselves and for those you help. There’s a lot more I could say about all this, so much so that I may write a book around this someday.