The recent study by Sohler and colleagues, “Weighing the Evidence for Harm from Long-Term Treatment with Antipsychotic Medications,” was met with much fanfare on MIA. I shared with others an appreciation that researchers had approached one of the key questions raised by Robert Whitaker in Anatomy of an Epidemic in a serious and thoughtful manner. Over the past five years, I have tried to engage with colleagues to discuss the implications of this book and many of them responded by dismissing the ideas of Anatomy out of hand, accusing Whitaker of “cherry-picking.” I was left wondering, if he picked the cherries, can someone point me towards the branches and the tree?
This study is an attempt to review the data in a comprehensive way. The authors conducted a rigorous literature search for studies that would allow them to address this hypothesis: “Long-term treatment with antipsychotic medications is less beneficial than no antipsychotic medication treatment for patients with schizophrenia.”
They set out a plan to search for studies with pre-specified inclusion criteria that the authors determined would allow a test of this hypothesis and they established a priori a rubric for evaluating the results. They assigned each member of the team to review a portion of the 239 abstracts that they found on their initial broad literature search. They identified 40 studies that met the initial criteria and a different reviewer was then assigned to determine if the outcome measures and comparison groups in each study allowed for inclusion in the final group. They ended up with 18 studies that were the basis for the paper. Of these, four of them had been included in Anatomy of an Epidemic.
The MIA reports emphasized that the authors conceded that their data “failed to determine whether long-term antipsychotic medication treatment results in greater benefits than harm.” However, this was not the main objective of the study. The authors were looking for evidence that long-term exposure is worse than no drug at all. The authors conclude that there is not sufficient evidence to draw this conclusion. Basically, the data is just not definitive due to poor study design. What the authors suggest is that the field was so convinced that long-term medications were necessary that studies comparing long-term drug vs. no drug were deemed unethical.
Many commenters on this site wondered if this would be the final blow to one of the strongest clinical recommendations in psychiatry. Whitaker’s own headline (“Timberrr”) suggested this was long overdue. I remain skeptical that profound change is underway.
One can read this study to fit in to one’s own narrative. Just as many on MIA focused on the lack of data supporting long-term use of the drugs, those who accused Whitaker of cherry-picking might see confirmation of their position given that a number of studies were cited that were not included in Anatomy and, in the authors’ opinion, do not support his hypothesis. A cursory reading of the article could lend support to both the pro- and anti- Whitaker camps.
I will address one of my concerns with this study and then offer my own reflections on why the recommendation for long-term use of neuroleptic drugs continues to have a strong foothold in psychiatric practice.
In this report, they determined that 11 of the 18 studies had either mixed results or were supportive of Whitaker’s hypothesis (rated “mixed” or “yes” in their paper). I am not familiar with all of the 7 studies whose results were found to not support the hypothesis (rated “no” in the paper) but I do know one of them and I was surprised to see it listed this way. This was the Northwick Park study. The researchers in that study identified 120 people experiencing a first episode of psychosis that was “not equivocally affective” (meaning not clearly meeting the diagnostic criteria for either mania or depression – a distinction thought to be important in psychiatric circles). They were admitted into the study when clinically stable (anywhere from 2-72 weeks after hospital admission and initiation of drug) and then continued on an anti-psychotic drug for another 30 days. In a double-blind randomized fashion, one group continued on drug while the other had their dose reduced by 50% for 4 weeks at which point the drug was discontinued. They were then followed for two more years.
The researchers published two papers. The first, published in 1986 and cited in Sohler’s paper, points to the higher rate of relapse in the group who stopped the drug. However, they published a second paper in 1990 which was not included in the recent report. In this study, they evaluated occupational outcomes and they found that among those who had come into treatment within a year of developing psychosis, the occupational outcome was much better in the group who had been assigned to placebo. This was despite the fact that the placebo group experienced a higher rate of relapse. The authors wrote, “It suggests the disquieting conclusion that the benefits of active neuroleptics in reducing relapse may exact a price in occupational terms.” [Note: I am using “psychosis” as a term to encompass what is also referred to as “extreme states” or “altered states.” I am not implying anything about etiology. It is just a label. I am speaking from the perspective of a psychiatrist so I am choosing to use the psychiatric lexicon.]
In my view, this paper would be at the very least in the mixed category shifting the count to 12 mixed/yes (supporting Whitaker) and 6 no. I do not read this as a significant blow to Whitaker’s hypothesis. I always read it as just that – a hypothesis. A call to question the accepted orthodoxy of our field. But while I celebrate the recognition that someone I respect is receiving with this paper, I continue to struggle with implementing the implications of Whitaker’s hypothesis into my daily work.
It has been hard for me to fully grasp – and I doubt I am alone in this — that reduction of relapse is not synonymous with optimal outcome. The notion that people may overall fare better in their lives despite having one or multiple encounters with psychosis would never have been self-evident to me. It is an odd thing that in many places I doubt I would ever be asked to explain this statement. But at MIA, it requires elaboration.
This brings me to another tough topic (again, on MIA but not elsewhere) and that is the difficulty a person can have in navigating the world in a psychotic state and—to be blunt—how difficult it can be for those around him. This is my biggest challenge as a clinician. I am trying to incorporate into my working life the many ideas I have learned here and from cherished colleagues around the world who are promoting different paradigms of understanding. But in my world, it seems that psychosis is tough. It is not infrequently scary. I can not speak from the perspective of those of you with lived experience. I am speaking from the perspective of one on the outside. One who tries to engage. One who answers the phone to speak to worried, frightened, demoralized, exhausted parents and loved ones. One who hears from friends who feel that they have been completely shut out of their friend’s life for no apparent reason. One who meets with the police and a confused person who has created a disturbance in the community. One who meets with individuals tormented by their experiences who are hoping for some sort of relief.
I have had the great privilege of learning about different ways of “being with.” Soteria, Open Dialogue, Intentional Peer Support while all being extremely valuable are not helpful for everyone. To some extent, every so-called alternative program of which I am aware is self-selective to some degree. By this I mean that those who are involved in these programs admit to having their own limits. Some of them by design only work with people who come to them. Others chose carefully who can participate. This is not intended as a form of denigration. I find much value in these programs. But one of the biggest challenges I continue to encounter are the individuals who are struggling in profound ways but who do not want anything from any of us, be it alternative or mainstream. While my failure to find ways to engage collaboratively with some of these individuals is undoubtedly due to my limited resources as a clinician and human being, I am not alone in these limitations.
While we might point to the power and influence of the pharmaceutical industry in pushing the drugs-forever narrative (and it does!), I continue to think there is more to it. The fear of psychosis, the exhaustion it can bring to everyone, the worry that a loved one’s life might get derailed in a way that is often destructive – these concerns also drive the narrative. In many instances, it is this fear, as much as any meta-analysis on the long-term risks of relapse, that leads to treatment recommendations.
I find that in my more traditional circles, there is often a lack of tolerance for people’s self-determination, especially when a person is following a less traveled and understood path. But in the MIA circle, I sometimes find a lack of tolerance for people who express these fears and worries. I have this notion – perhaps naive – that if both sides could acknowledge the validity of each others concerns, we might be able to move forward. Maybe if we could do this, then when trees fall in that forest, more than a few us us will be able to hear them.
thanks Sandy. I agree that for clinicians deciding what to do is a real dilemma. Hearing voices can be scary and very painful for the individual and others around the individual.
To keep the record straight, I think that early relapse after drug discontinuation can be chalked up to drug withdrawal. As you know, I believe in the Wunderink et al. study, those discontinuing medication had more relapses right after discontinuation, but those on meds had more relapses later in the follow-up interval
I’ve been reading American Journal of Psychiatry and JAMA Psychiatry. The last couple of issues are full of the NMDA, fast spiking GABA interneuron story for psychosis. (David Lewis, the guy who did the monkey studies on the anti-dopaminergic drugs, is a big contributor.) I keep wondering, “why no study using drugs that target the fast spiking GABA interneurons without the anti-dopaminergic drugs?” The answer I keep coming up with is that seroquel and abilify are big money makers.
I think we need a campaign to get the money out of medicine.
Jill,
While I don’t disagree with some of what you say in other parts of your response, I’d just like to note that I find it a bit disturbing that you seem to have boiled down Sandy’s talk of extreme states in general as sometimes being ‘scary’ (for the person and/or those around them) to ‘voices are scary’.
While it’s undoubtedly true that some people are scared by some voices they hear some of the time (and that others around them may be scared that it’s happening, and so on), it still feels somehow dangerous to me to translate all that ‘extreme states’ can encompass into ‘hearing voices’ (since hearing voices, in and of itself, doesn’t have to be and often isn’t scary, too).
What is behind that, I wonder?
-Sera
Hi
I was looking at MIND UK advice on withdrawal from Depot Medication ( I noted Robert Whitakers observations also on depot withdrawal).
MIND advised depot tapering as unnecessary but this definitely was not my experience. I had to switch to oral medication and reduce very slowly. But after maybe 2 years I was down to “anxiety” levels and from there less and less.
If I had followed a normal interpretation I could have considered myself mentally ill for life, and I would still be trapped in psychiatry – this is the way a lot of people are caught.
(I had to find ways of dealing with what came through the surface as well)
I do not think this is about money. I think that any novel agent purporting to work in a new way would have a good market. Seroquel is off patent and most of the new drugs are “me too” drugs. However, there have been no truly new agents in many years and although I have no doubt Dr. Lewis’ work is important, the notion of NMDA/GABA involvement in psychosis has been with us for a long time.
The deeper issue for me is that there is not likely to be some molecule that is effective for what are extremely complex problems. These conditions are likely heterogeneous.
While I do not dismiss neuroscience, I am no longer sure this is the level at which we will arrive at an understanding of these problems which is actually helpful to people.
Sandra,
As this article notes, antipsychotic drugs provided 18 billion dollars in profit in 2011, the most recent year I could find data for. The companies are constantly seeking to expand their markets by targeting the most vulnerable for use of antipsychotics, for example the foster children in this article. As far as I know, antipsychotics are still huge money makers. I wonder if you have data that says the profits from these drugs have started to go down, or if this is only a speculation?
http://www.denverpost.com/investigations/ci_25561024/drug-firms-have-used-dangerous-tactics-drive-sales
And in 2014, Abilify was in the top 15 of all drugs prescribed for any physical or mental issue, with 8.7 million prescriptions:
http://www.medscape.com/viewarticle/829246
Seroquel was down at number 57 with 2.4 million prescriptions “only”, but that is on a list of all drugs for physical or mental problems. It’s correct that Seroquel is off patent. Also you’re right that no new antipsychotic drugs have been fabricated for many a year now… I read recently that corporations are starting to give up on researching a so-called 3rd generation of antipsychotic drugs because of lack of efficacy and lack of return. If so maybe that is partly good news, as the motivation to prescribe these often-harmful pills may lessen as patents expire. Hopefully other purely biological attempts at treatment will then sputter and fail, opening more minds to psychosocial approaches.
I agree that psychotic states of mind are heterogenous. There is almost certainly no one valid illness or gene (or even set of genes) running through what is called psychosis. Therefore the biological and neuroscientific approaches are almost certain to continue to provide nothing useful in terms of improving outcomes or reducing suffering.
Effective approaches to psychosis, particularly the developmental object-relations approach, already exist in the writing of many authors such as Harold Searles, Vamik Volkan, Jaakko Seikkula, Ira Steinman, Gaetano Benedeti, Yrjo Alanen, Murray Jackson, and others past and present in ISPS. We know more than we let on.
BP-
What I was trying to say is that if the researchers found compounds that targeted GABA or NMDA, as Jill suggests, those drugs are likely to be as profitable as the current drugs. She was suggesting that drugs with these targets are being blocked from development for profit reasons and that was what I was challenging. Any novel compound that is promoted as having an antipsychotic effect is likely to be a fairly profitable drug. The failure to develop these compounds suggests that this strategy is suspect. I think we are in agreement on that.
Ok, now I see what you were saying, and agree with you on this, that any compound promoted as having an antipsychotic effect is likely to be fairly profitable, even if it’s based on 2 “positive” FDA trials (with dozens of negative trials hiding in the shadows).
I think you strike on an important issue – there is a difference between what is scary to the person and what is scary to the clinician or friend or family member watching it. And it is accepted in this particular society and culture that it’s OK for us to try and stop something another person is doing by blunt and even violent means if it is scary to us. Not saying that extreme states are not scary to individuals who experience them, because they often are, but I think we have to be honest that a large amount of psychiatric intervention with people in extreme states is PRIMARILY meant to make the practitioners, friends and family feel better, not to assist the patient, though of course it is rationalized in the latter way.
It is fascinating to me the cross-cultural studies I’ve read showing that in cultures where voice-hearing is accepted and not feared, the voices themselves are much more likely to say positive things about the hearer! This shows that culture plays a huge role in how voices are experienced and how we choose to intervene or not. And you are absolutely right, to reduce this to a chemical-mechanical problem is never going to yield any long-term results, though it may yield plenty of dollars and prestige to the companies and practitioners who promote the practice.
Thank you for the post – it is good, thougthful reading.
I think the following sentence sums up a central point in the whole discussion on antipsychotics and short-term vs. long-term benefits:
“It has been hard for me to fully grasp – and I doubt I am alone in this — that reduction of relapse is not synonymous with optimal outcome. The notion that people may overall fare better in their lives despite having one or multiple encounters with psychosis would never have been self-evident to me.”
I can follow the above line of reasoning: That reduction of relapse is intuitively a good thing that must also have positive implications in the longer term. But I think it becomes less evident the moment you realise, that this only makes sense in a sort of (no insult intended!) naive view of mental distress: one which sees the distress as caused by something separate from the person. A view which sees antipsychotics as targeting a disease instead of a whole person.
When you realise that the motivation to act on irrational fears, confused thoughts, voices and so on is the same motivation that helps the person strive to achieve important goals, to learn new things and to build positive relations it becomes much less obvious that (at least partly) shutting the engine of motivation down is necessarily helpful in the longer run.
Seen this way, the dilemma of short vs. long-term benefit can be understood as an extreme and medicalized version of what we all try to find in our lives: The fine line between what we can endure and grow by, and what we, at least for the moment, need to tranquilize away in order to remain functional.
Thanks again for an honest and quite fearless post.
Thanks for the comments and no offense taken! In fact, I have considered psychosis in an illness model for most of my career and I continue to struggle with the different paradigms. I think it is the clash of these different conceptualizations that lead to various groups interpreting the data in such disparate ways.
Excellent and thoughtful explanation. Thanks!
VERY well put! Thanks!
Thanks for writing this, Sandy. This – in a way – gets at what I was also trying to get at with my Mind the Gap blog from a while back (http://www.madinamerica.com/2013/12/mind-gap-space-alternatives-force/)… That gap that exists between the wonderful alternatives so many of us are creating and the people who are doing okay in the world on their own… That gap where people who don’t want to engage in an alternative (or can’t due to lack of access, lack of ‘fit’ with the alternatives self-designated guidelines, etc.) but who are very much not moving through the world with ease seem to fall…(Of course, my blog is about that, but also pushing to not lose sight of the impact of reverting back to force at the same time…)
I actually tried to push for a lengthy conversation about this at a group gathering once, and it happened a little bit, but not fully. I’d be interested in coming together around that conversation moreso, though. It’s a really tricky one (wrapped up in civil rights and discrimination and so much else), and one that I do think gets ignored more often than not.
Let me know if you see opportunities for that conversation to happen somewhere 🙂 I’d like to be involved.
-Sera
I did just one to add that like Jonathan above, I love the recognition that ‘reduction in relapse’ is NOT necessarily the best and most important goal and may, in fact, not be worth it at all… That’s a fairly radical shift for many that bears much further discussion.
Thanks 🙂
-Sera
Hi Sera,
Thanks for the comments. I have appreciated your own honesty in this forum and a willingness to speak to some very difficult topics.
Thank you Sandy, it is as Always a pleasure to read your blogs. I agree, it is far more easy to make beuatiful statments than to do the very hard day to day work. But nevertheless, I find it extremely important to find alternatives to the psychiatric system, including its diagnosis and far too much prescriptions of drugs. BUT maybe more important tyhan that, to realize it cannot be “healthy” to spend time in a psychiatric ward together with a lot of other people in oain, including the staff. Very often the staff also talk about feelings of hopelessness, fear and powerlessness.
Latest last week I spent time on a psychiatric ward in Sweden and ( again) I thought to myself; how can anyone Think this context will be good for people who “are lost”?
And many of us trying to create alternatives have realized the need for human and vivid places where people have a possibilty to stay mentally alive. Maybe that is one of the most significant differences, and maybe also the difference which makes the difference??? Love as Always, Carina
Thanks, Carina. It is always an equal pleasure to read your comments! All I can add is that you are one of the people who has helped to not only think but to actually feel that there can be such a fundamentally different way of being.
i think many of the issues can be boiled down to a few simple points, not even addressing the horrible drug angle:
– the labels themselves make people thinks something is wrong with them. if people understood we are all on the spectrum of humanity, they would fret much less about what they are thinking/feeling. if a patient does not see himself as abnormal, and is not seen that way by others, he will stop the endless worry and self analysis that goes along with it. he will accept himself.
-a new way of thinking about one’s thoughts. thoughts are just not that important. . much more important are one’s actions and behaviors. everyone in teh world has disturbing, weird, ugly thoughts. if we do not give them the power to derail us we will be much more able to manage our days. when endless dissecting of the millions of thoughts we have each day is stopped inner peace will come.
just a couple of ideas i wanted to share, learned after years of horror with my husband’s journey through the “system”.
all the best
erin
Thanks, Erin. These are valuable contributions to this discussion.
“……accusing Whitaker of “cherry-picking.” I was left wondering, if he picked the cherries, can someone point me towards the branches and the tree?”
I just have to say this is one of the best quotes I have read on MIA…where indeed are the branches and the trees?
Thank you, as always, Sandra, for your very thoughtful and honest reflections.
I completely agree that we need to listen to people’s fears and concerns about extreme states. As a family member who has tried (and is trying) to create a healing home, I believe I understand exactly what you are saying about the fear over what will happen to one’s loved one.
Extreme states are incredibly scary to watch, but for us, this fear was confounded by a lack of real knowledge about extreme states, a lack of support , a very tenuous grip on hope, and mostly, by the ‘fear’ of our loved one being subjected to coercive treatment. (We had never seen the same kind of ‘terror’ state before our loved one was medicated so we always wonder if the intensity of extreme state was related to ‘supersensitivity’ or ‘withdrawal’ ). I do not like to go into very much specific detail, (it is not my story after all), but I will give one fairly benign example to explain what I mean: as painful and distressing as it was to listen to intense screaming, it was absolutely terrifying to know the neighbours might call the police and that our loved one would end up on an inpatient ward again.
As time passed we learned more about extreme states both from our experiences, guidance from family therapy, and from the brave souls who post their stories here. We started to believe that the terror would eventually subside (and it has) . Our brilliant therapist needed to teach us that we did not need to fear our loved one, and indeed helped us realize that our loved one also needed to realize he was not a dangerous person. (Looking back I can see how the `fear’ of psychosis took on a life of its own, spiraling out of control and interfering with efforts to promote recovery). However, our main fear about how society responds to extreme states remains (e.g. worries about keeping one’s loved one safe, and helping our loved one go back out into the community without the worry of coercive treatment) . I wonder how often attempts at ‘alternative’ approaches fail because other families like ours, find that it is ‘almost’ impossible to provide an ‘alternate’ healing environment given the ‘narrative’ that exist in our society.
Listening to each other is so important but listening is easier when you don’t live in fear. That is why I feel If we could separate ‘forced safety’ from ‘forced treatment’, it would result in people being able to listen to each other more.
Thanks again, Sandra, for all you do.
Talking about extreme states of terror just watch the ‘acting out’ regularly seen in the media – when a person stops taking their medication. You don’t see this much before a person goes on medication.
I’ve experienced supersensitivity myself, this is why I spent years withdrawing carefully. This is why CBT and the Mindfulness are good. (I’m sorry if I irritate anyone with these phrases).
I find your comments about your experiences helpful -not irritating!
I so totally agree with you! Why is it that when a person is acting dangerously we automatically consider that we have carte blanche to “treat” them against their will? What would be wrong with holding onto someone until they calmed down and then finding a safe place for them to go? Of course, we’d have to create safe places, and it’s much easier to blame the client for making our lives difficult.
It is indeed the fear of those in extreme states and our own feelings of loss of control that make it challenging not to use force to intervene. But as I said above, most interventions are really designed to make the intervenor feel better, not specifically to help the client, who may or may not want the kind of “help” we wish to force on him/her. Far better to simply create safe places like Soteria House where people can chill out and decompress for a while without fearing for their own safety, and letting them decide what would help and what would not. Drugs could be a part of what is offered, but only offered with honest informed consent. My guess is that no one would choose that option for more than the very short term if they were not intentionally misinformed and pressured to do as the authorities told them to do. When one is already feeling out of control, taking away more control is not a good solution!
— Steve
I am involved assessing and (trying to avoid) detaining patients under the Mental Health Act in the UK. Sandy’s article is thoughtful and reality-based. Despite my commitment to Soteria and similar approaches I still believe there are times when people in extreme states need some form of ‘containment’ for their own or other people’s safety (often for iatrogenic reasons, but that’s another debate). It is what we do with that containment that matters, and where problems (and forced medication) so often begin. To me, that point is where dialogue needs to start, dialogue that had not been possible until the person was detained. And we should be holding off with the medication for as long as possible while dialogue is established. If we made genuine attempts along these lines, patients might be able to avoid forced medication altogether.
Well said!
Yes. I think your notion of “forced safety” is helpful. And then we want to look with Carina Hakansson’s eyes to this place where people go to insure that it is a place that fosters healing and recovery.
At the same time, people need to buy into a different model. If the model is that these are symptoms that need to be suppressed then there is no point to doing anything other than suppressing them. This is a hard concept to change.
Regarding “who are hoping for some sort of relief.” in the twelve 12th paragraph from the top.
People have been struggling with the burden of knowledge since man/woman ate of the tree of knowledge, or if you like since Homo sapiens developed a higher intelligence. If people come to you looking for help, you do the best you can.
I am 47 years old, designated seriously mentally ill at the age of 19. At my local hospital, at that time (1987) there were no locked doors to the psychiatric ward. If someone had the need/ability to leave they could attempt it.
You can only give medicines/drugs to those that want them.
For treatment, I would suggest looking at the senses that send information to the brain-mind. To reduce the stimulus as much as possible. Then the brain-mind might calm down.
Sight , sound , and smell are some of our most important senses. If doctors really want to help disturbed people they have to place their patients where there is tranquility. No internet, no city entertainment.
Being locked into a building is not at all calming in my opinion. The days, weeks, or months locked inside makes people worse, not better. As any animal locked in a cage is conditioned similarly.
Removing the mind that man/women received in the Garden of Eden is the job you signed up for as a psychiatrist. Look at psychiatry’s history. Destroying the brain is the cure/treatment.
Christians use Jesus’s death and return to deal with the burden of guilt/worry from knowledge of good and evil.
People without religion free themselves from responsibility with the scientific medical diagnosis of “bipolar disorder” and such psychiatric descriptions of behaviour.
Chance of “Relapse” means the persons spirit is not dead yet.
“Apathy and indifference is the final result of all of the most potent psychiatric treatments.” Peter R. Breggin, MD
Stupid people made stupid from various psychiatry treatment can not look after themselves or be employed from their physical lack of brain cells where our thought and intelligence comes from.
I hope self autonomy is included in the judgment of successful psychiatric outcomes. I think it is the most important factor.
I agree when you say the chance of relapse means the person’s spirit isn’t dead. It’s a positive way of looking at relapse, one that engenders hope. On the other hand, if you read Alex’s comment below, he says that he changed many things about his environment and himself, and therefore doesn’t fear a risk of relapse. He seems to have plenty of spirit!
LOL…Oh gosh, however will we agree on any of this? 🙂
And btw, I don’t mean at all to imply that I don’t get tested, that happens all the time. However, now, when life challenges me, I feel prepared, even if it’s from way out in left field. My vantage point is present time, a whole different perspective than when we are loaded with baggage from the past. We can release that, and everything changes, including our resilience.
One last thing for now (my spirit does rev up when I’m talking about healing)–you said the key thing, Rossa, to my mind–“does not FEAR relapse.” Fear-based living is self-fulfilling. Faith and trust is a different fuel, and changes our experience.
The spiritual masters discern in two categories: fear-based vs. love based. Can’t be both, they are opposites. And each comes with its set of disparate experiences and outcomes. We have a choice, here.
I was stuck with a psychiatrist once, for two years. For insurance and location reasons, he was the only option I had (or so I thought at the time, as per what I knew). I began to see him as I was tapering from nine medications, because, at least, he supported my desire to be off psychiatric drugs.
I had started on my herbs, as per a highly experienced herbalist, joined a Chi Gong class as was recommended to me, and I began a healing meditation program which took me through to new dimensions and perspectives, until I was able to get my head on straight, ground, heal, and move on from all of this, which I long have.
During my withdrawal process, I was extremely anxious, paranoid, dreaded every moment I was awake from chronic physical pain and emotional anguish, crying a lot, feeling so much grief, fear, and worry of permanent damage and a lifetime of disability and either homelessness or institutionalization. I have family, but that would have been out of the question, on my part.
The psychiatrist continually reminded me that I had lost my dreams, that this is why I was grieving, and that I had to accept my fate. I told him that I wanted to commit suicide because I had lost all hope, that I had been in psychiatric treatment for 20 years, and despite that I had a 17 year career already under my belt and a couple of degrees, including my graduate degree in psychology, He kept telling me that I had lost my dreams, and he called me a liar a few times, and he yelled at me once because he was frustrated with my chronic anxiety. I ran out of his office while he sat at his computer, looking very angry. I looked back at him as I opened his office door, totally shaken, terrified (triggered to high heaven, of course) and he just started at his computer screen, looking really angry.
I’m a child abuse survivor, then I felt abused by this ‘medication’ which temporarily (and extremely) disabled me, and then I had to deal with psychiatric abuse, as per what I describe above. I have way more stories, this is truly the tip of a very large iceberg, but this one is my most powerful, because I had kind of a relationship with this guy, unfortunately, and I thought at first I got lucky because he was fine with my tapering. But that was only a superficial assessment, I soon found out.
Can you imagine how challenging it was for me to around this person? And I really felt I had no choice, I had exhausted the resources of what I was aware at the time.
Looking back, I’m wondering if he had some kind of ‘psychosis’ going on, and I very sincerely don’t mean this to be glib. Whatever you want to call it, to me it was toxic and dangerous. I finally learned how to extricate myself from the situation, without causing myself trouble, but that was a trick, especially after what they had done to my brain and nervous system. Fortunately, I was able to reverse and heal all of that, but it was rigorous. That was my journey of healing.
My point, of course, is that madness, psychosis, crazy, out-of-control narcissistic rage—whatever anyone wants to call it—is in the eye of the beholder. We might want to consider that society is psychotic, and perhaps those that look more “insane” to the mainstream, are actually the ones who are more evolved, tuned in, and aligned with truth—and, perhaps, EXTREMELY frustrated about how they are treated, disregarded, dismissed, stigmatized, discriminated against, second classed, spoken for, and on and on.
That would mean that the “identified patient” (to use the lingo) is, in reality, the true and authentic community healer, in that they are expanding the consciousness of the community, forcing us all to struggle with our fears and challenges. We all have them, 100%. Why scapegoat people who are justifiably angry, to the point where we all just want to tear our hair out, because the ‘other side’ just won’t listen?
At the end of the day, it’s probably one of the biggest challenges in humanity for one person to say to another, “You really, really wounded me, and I suffered for it. I’m better now, but I think you need to grow.” That’s about the most neutral and direct way I can think of to say it, for better or worse.
It’s hard to say it and it’s hard to hear it. Especially when it is family. And also, when it is a health care provider, etc. People get angry and defensive, and can say even more confusing, demeaning, and stigmatizing things. If they have some kind of financial or political power over you, things can get rather nasty.
These are major double binds. What is the best way to confront abusive, crazy-making, gaslighting, toxic people? The answer to that question would solve a lot of problems, because they can really mess people up. Things never get resolved, they just go on and on and on…draining everyone concerned.
Sandra,
Reading the meta-analysis in question, I had the sense that several of the studies supposedly countering Whitaker’s hypothesis had been slanted or recast by the authors when they should really have been found to be mixed or even supporting the hypothesis that drugs cause more harm. I imagine that the researchers unconsciously “felt the heat” of those at their university and profession and in industry who might be upset if they came out strongly in support of the anti-neuroleptic position. These imagined attitudes can strongly influence behavior and perception and it seems like they affect how many psychiatric researchers twist their research to support the dominant biomedical paradigm. To me this shows spinelessness and a lack of courage, but I’m sure it doesn’t seem that way to them.
Regarding psychosis being very difficult, it is! I am a person with some brief lived experience of that. But I also read a lot about longer-term cases of “schizophrenia” or psychosis. There are several ways of understanding it that I find helpful from a developmental standpoint:
Failure of the Stimulus Barrier – In most healthy people, those who receive enough support and nurturance in whatever form from the outside world, a “stimulus barrier” is hypothesized to form walling off conscious from unconscious thoughts and feelings, and clearly differentiating internal and external stimuli. In “schizophrenic” mental states, this stimulus barrier never forms or is broken down, and that results in the extreme confusion between what is inside and outside, between what is a fantasy/dream and reality. Some good authors on this were Donald Rinsley (e.g. Treatment of the Severely Disturbed Adolescent), James Masterson, Michael Robbins (Experiences of Schizophrenia). As long as it exists, this lack of a perceptual stimulus barrier makes it very hard for the person to feel safe or start to become more functional. From my reading I think the failed stimulus barrier can only be resolved by the establishment of a “good enough environment” over a long-period of time, characterized by whatever makes the person feel safe and attached to other people – this can occur in psychotherapy, in group programs, in family therapy, or wherever; it is unique to that person.
Fusion over Splitting – In severe affective states (e.g. borderline conditions) the main defenses involve splitting of good and bad images of oneself and others to ward off ambivalence, and more fundamentally as a result of insufficient positive introjections. But in psychosis/”schizophrenia” the defenses used are even more primitive and involve fusion, which means an almost total inability to differentiate between what is an aspect of oneself and what is an aspect of others/the external environment. This results in the nondevelopment of many ego functions like frustration tolerance and leads to the engagement in addictive or self-destructive behaviors as a compensation. It also makes it very difficult for the fusing person to use outside help because they often attribute aspects of their own rage and terror to those outside them (paranoia), being unable to clearly differentiate between themselves and others. Again, fusion can only be overcome via a long-term process of working on the perceptual problems in a supportive environment; the drug-only approach is doomed to failure.
The Out of Contact State – This is something Harold Searles wrote about in his classic books. It refers to the state where someone has been so traumatized, abused, and neglected, that they have given up hope that love, redemption, and good external people actually exist. Their internal world is a wasteland from which they cannot project the expectation, or even imagine, that someone external could actually care enough to bring them back to emotional wellbeing. In the Western world, this hopeless state is often compounded by the effects of drugging which reduces the capacity to feel, and by the diagnosing/labeling/stigmatizing process, which tends to push a person more deeply in an “other” or out-of-contact state. In a developmental sense I would argue that long-term drugging ironically increases the chance that a person will be pushed from the ambivalent symbiotic (hopeful) state into the out-of-contact position. For more information on this I recommend the books Schizophrenia and Related Subjects (Searles), Countertransference and Related Subjects (Searles), The Bad Object (Seinfeld), The Infantile Psychotic Self (Volkan).
These perceptual, developmental, and cognitive difficulties are indeed very challenging and often compounded as already stated by the drugs and labeling. They also require great skill and understanding – as well as resources, a supportive environment, and a significant amount of time – available to an individual therapist or family therapist who tries to help. If the therapist does not understand the processes of psychosis, or if drugging/family negativity/lack of finances etc., if one of many possible obstacles gets in the way, the process of potential healing or increased attachment can be easily interrupted.
In my opinion the biomedical model usually makes real healing impossible since it simply tells the person they can’t recover and then pushes them deeper into withdrawal via drugs. However, anecdotal accounts such as Benedetti, Searles, Steinman, Volkan, Jackson show clearly that given long-term individual and/or family support, most psychotic or “schizophrenic” people can do very well in terms of becoming non-psychotic, working, and feeling well. Unfortunately our society all too rarely provides the resources and support for this to happen and I think this is some of what you are seeing Sandra. Perhaps you are also do not have the ability to work with these individuals long-term (eg. 3-5 years or more, which is how long a recovery process of psychosis often takes) in the setting you are in; I don’t know. Or perhaps you are not personally well-suited to working with psychotic people: Some people just don’t take to this difficult work (no offense intended).
Anyway thanks for your paper which I found interesting as always.
Hi, Sandy,
Admittedly, it’s been some time since I read Anatomy of an Epidemic, and I’m no academic researcher, so I probably have failed to grasp the nuances about the research you report on in your excellent post, but here’s what I have come to believe about all the pros and cons surrounding the idea that “maybe” people don’t need to be on long term antipsychotics to do well. That’s what I took away from Robert’s book – that antipsychotics aren’t the be-all and the end-all that they are touted to be, the research behind them was questionable, they are dangerous in high doses, polypharmacy is dangerous and unproven, etc, and “people” can and do recover without them. Many people have taken away the wrong idea from his book, that all you need to do is stay off the drugs and you’ll get better. And, as you point out, the ramifications for family and friends, let alone the individual, not being medicated, are awful. How can anyone get better if their family hates them, fears them, shuns them, infantilizes them, etc. when they are in a psychotic state? And, in the same vein, how can people recover if they are disabled by the drugs?
Much of recovery is about relationships. These relationships may be irreparably damaged if, and I’ll be blunt here, if the person isn’t first sedated enough to clear some of the delusional thought patterns away. All the drugs do is sedate, they don’t fix anything else. These studies that you quote I’m pretty sure don’t look at what ELSE the person is doing in his or her life to make recovery happen. Even that concept, that recovery can happen, is rather revolutionary. I can think back to Dec. 2003 when my son was first hospitalized, and no one was talking in a big way about how to go about recovery outside of the medical model. Social media was still in its infancy back then. All these studies do is look at drug versus non-drug, and the non-drug approach often looks like a train wreck when most people give up on their relatives because it takes more stamina than they can muster to see them through. I was against the drugs, too, and still am, but I do see that they bought our family a bit of time to figure out how to improve the relationship, get my son up and running socially, and work towards eventual freedom from the crutch that those drugs had become.
I came across a TED talk recently by a Harvard professor named Robert Waldinger, and this is what he had to say about what kills people sooner rather than later. It got me thinking that yes, neuroleptics in too high doses kills people early, but loneliness may be the biggest problem for people who’ve been labelled with a serious mental health problem. Take too many drugs, you’ll probably be isolated, take none at all and people will also want to run the other way. (And, yes, I would love it if public health systems ran Soterias and Open Dialogues, but they don’t.)
” . . loneliness kills. It turns out that people who are more socially connected to family, to friends, to community, are happier, they’re physically healthier, and they live longer than people who are less well connected. And the experience of loneliness turns out to be toxic. People who are more isolated than they want to be from others find that they are less happy, their health declines earlier in midlife, their brain functioning declines sooner and they live shorter lives than people who are not lonely.”
Recovery is largely about the relationship. Pills can’t buy this, but the unmedicated state can also destroy someone’s ability to connect with community.
Rosas,
You make many fine points and brought up the name of an old college classmate! I will track down his TED talk. But I do want to emphasize one particular point – that some people read in “Anatomy” that the drugs are always bad. I do not think that is what the book said but it is that particular interpretation that is in part why the book has been so controversial. I tend to consider the drugs the same way you do.
And I would opine that one reason some people read the book with that bias is because their own biases blind them to any possibility but the dominant paradigm being 100% right. There are many reasons for this, practical, psychological, and financial, but whenever I see someone jumping on an honest critique and claiming the person is biased, I know it’s time for them to look in the mirror, because they’re almost always projecting their own bias in the opposite direction.
Rossa and Sandra,
When I read this it reminds me that people have very different experiences with how medication effects someone’s state. (e.g. reinforcing Sandra’s position that we must all listen to each other 🙂 For us, we did not see any drastic improvement, but rather a slow creep up of functioning We saw this similar response to both the medicated and non medicated state. but the medicated state added more symptoms than we had seen before., and seem to put our loved one on a much more serious course.
I think this is where the problems with DSM diagnosis really can hurt people. Even if you use the medical model definitions, it is unbelievable that people with such different symptoms and history fall under the same umbrella term. (Take ‘schizophrenia’ for example – how could all the different `subtypes (‘paranoid, delusional catatonic, ‘mixed’ etc, , early onset, late onset etc.) all be considered the same condition that is clearly defined from things like ‘PTSD`, trauma, bi polar, psychotic depression, borderline etc.)
I understand the fear of “psychosis” in our culture but the narrative is wrong; psychosis is a social welfare problem rather than a medical problem. Psychosis is predominately scary for all who have not experienced it (and many who have) because it varies widely from an erroneous concept of “normal” human psychology. However, psychosis is the normal, natural neurobiology of painfully distressful experiences; psychosis is emotional distress- emotional pain from distressful experiences. Assuming emotional suffering to be a medical problem is counter-productive and “treatment recommendations” based on this assumption are counter-productive. An emotional crisis is alleviated by understanding and resolving causation from real social problems; treating emotional sufferers as if they are crazy only exasperates their situation. Sedating people in an emotional crisis may assist in the short term but long-term medicinal therapy reduces the physical energy and mental acuity necessary for resolving real social problems. Considering painful emotional suffering to be a medical problem causes much suffering in our culture and is a leading cause of suicide.
Best wishes, Steve
“Considering painful emotional suffering to be a medical problem causes much suffering in our culture and is a leading cause of suicide.”
Yes. It is cold, empty of compassion, and drives people to the brink. That level of dismissal and emotional abandonment leads to utter hopelessness on top of chronic wounding.
Many commenters on this site wondered if this would be the final blow to one of the strongest clinical recommendations in psychiatry. Whitaker’s own headline (“Timberrr”) suggested this was long overdue. I remain skeptical that profound change is underway.
I think a vulnerability of MIA’s tacit ideology is the misconception, or perhaps wishful thinking, that clear research and logically valid, cohesive arguments will cause psychiatry, or any oppressive social institution, to change its practices. What’s neglected is the political nature of the issue (pharmaceutical profits), just as with climate change (fossil fuel profits).
Too true, sadly!
Thank you again Sandy for this thought provoking article. I agree with your conclusion that all of us could benefit by respecting and listening to what each of us struggle with as we try to understand and support people in working through/living with psychoses and other extreme, complex, emotional/human experiences.
I have my own lived experience of recovery dating back 38 years and have also tried to find my place working as a clinician/professional in the mental health field. I have been very humbled over time, especially in recent years when two of my four teenage/young adult children struggled through various emotional difficulties, one with an experience of what could be called psychosis. We were able to use a combination of individual and family therapy, time without labeling (tolerating uncertainty), meditation /mindfulness, minimal PRN meds and other supports to work through these difficulties together. Both of my adult children are moving forward and enjoying their lives at this point for which I am grateful.
All of this has taught me to be more humble and to respect the complex and the known, theorized and as yet unknown things that may contribute to extreme emotional experiences. I also see how the medical model’s focus on diagnosing and medicating symptoms is very simplistic and often makes what is often both a painful and a mysterious mental health/existential crisis much worse. My questions, as yet unanswered by the field are:
Do we know that (most) mental health diagnoses are valid?
While medication addresses immediate symptoms, given it’s severe side effects, is it worth the risk?
Might it be possible (yes, in my son’s experience) to come through psychosis or other extreme states with intense support and very little medication and may this have better long term outcomes?
Once someone is on psychiatric medications when and how should they come off these drugs?
My hope is that we continue to develop alternative supports that help with extreme states and work to answer the above questions. Too many times we may see our piece of the struggle, but miss others’ valid concerns. Thank you Sandy for once again reminding us that there is some truth in most of our questions and perspectives. Our work is not easy and I deeply respect the sincerity of all that post here at MIA. Thank you for the dialogue.
Sandra,
You touched on quite a few topics here, I’d like to address a couple. And, after meeting you in real life, and listening to your viewpoint, I do understand you have a difficult time comprehending what “psychosis” actually is, thus, understanding the perspective of clients. But I do respect your desire to try and broaden your own understanding very much.
You stated, “It has been hard for me to fully grasp – and I doubt I am alone in this — that reduction of relapse is not synonymous with optimal outcome. The notion that people may overall fare better in their lives despite having one or multiple encounters with psychosis would never have been self-evident to me.”
I can only speak from my experience, but since I had a traumatic situation covered up by psychiatrists claiming I was “bipolar,” then drugging me. Which does seem to be very common, my experience may be relevant on a broader scale. First, a traumatic experience that one is trying to fully understand, but has not yet mentally come to grips with, is not a “lifelong, incurable, genetic” brain disease. Thus traumatic experiences do not require psychiatric drugs, supposedly given to fix a non-existant “chemical imbalance” in the brain. Psychiatrists don’t seem to grasp this reality.
Second, today’s recommended “bipolar” cocktails are medically known to cause “psychosis,” via the central symptoms of anticholinergic intoxication syndrome. In my case, the psychotomimetic “voices” I got in my head, due to the psychiatric anticholinergic toxidrome poisonings, were the “voices” of the people who had abused my children, incessantly bragging about their murder of their own first born, their rape of my child, and trying to come up with ways to convince me to kill myself. This type of drug induced “psychosis” was invasive, insane, disgusting, and highly annoying. But not actually really scary, more stupid, since I had no plans to kill myself to cover up their rape of my child.
And it should be understandable that since the psychiatric drugs can cause “psychosis,” when wrongly given to someone dealing with a traumatic experience. That such trauma survivors would be better off the drugs, even after suffering from such a psychotomimetic “psychosis.”
And once weaned from the drugs, one often does suffer from a drug withdrawal induced super sensitivity “manic psychosis.” Psychiatrists consistently claim this to be a return of the original misdiagnosis, rather than confess that withdrawal from the “bipolar” cocktails is known to also cause a super sensitivity “psychosis.”
In my particular case, this “super sensitivity manic psychosis” took the form of an awakening to my dreams (my psychiatrists all believed dreams were “psychosis,” I don’t personally share that belief system, however). And this type of “psychosis” / awakening was a spiritual story, in my case. An awakening to the concept of the collective unconscious, my place within it, a weird seemingly Hermetism inspired trip to the seventh heaven for the emptying of Shoel or Pergatory, my supposed gaining of eternal life, and Jesus supposedly claiming it was time for the final judgement. In other words, not actually a bad “psychosis” for a Christian, it was a spiritual awakening to my dreams, and the promise that I was indeed to be written into the biblically hypothesized ‘book of life.’
But since I’d already learned that psychiatrists don’t share the belief in the “seen and unseen” that Christians share, I didn’t bother to discuss this spiritual journey with psychiatrists further. This may be why, “one of the biggest challenges I continue to encounter are the individuals who are struggling in profound ways but who do not want anything from any of us, be it alternative or mainstream.” Since, many psychiatrists do not share a belief in the “unseen,” God, and the Holy Spirit. Some of us learn it’s not worth our time to discuss our spiritual experiences with psychiatrists.
I hope my experience might help you, and other psychiatrists, understand that the psychiatric drugs are not beneficial to all human beings, and can indeed create “psychosis.” Which is why some, if not all, people may in fact be much better off, not taking any of the psychiatric drugs, especially after such psychotomimetic and drug withdrawal induced super sensitivity “psychoses.” And, I hope it also helps to explain why sometimes, one chooses not to discuss unusual spiritual matters, with non-believers. Psychiatrists overstep their bounds sometimes, IMHO, since you are not actually in charge of all within reality, including both the “seen and unseen,” but many psychiatrists seemingly want to be. Some things are just not a psychiatrist’s business.
Hi Sandra,
if a tree falls in a forest it obviously lacks insight into it’s own behaviour, is a danger to self or other, and would require tree tment (benzodiazePine?) without informed consent. A new branch of psychiatry?
someone had to say it lol.
seriously though, I agree that it’s certainly not over bar the shouting. From my personal experience, the commission of criminal acts such as distributing fraudulent documents and silencing witnesses seems standard operating practice. Maintain power and profit at all cost is the modus operandi and we can expect nothing more.
regards
boans
That is a clever word usage Boans, BenzodiazePines.
“It has been hard for me to fully grasp – and I doubt I am alone in this — that reduction of relapse is not synonymous with optimal outcome. The notion that people may overall fare better in their lives despite having one or multiple encounters with psychosis would never have been self-evident to me.”
I agree that this seems counterintuitive, but only if one sees it through the eyes of someone who equates relapse with long term failure. This is the narrative that the medical community tells us, and it’s a compelling one unless one steps back and try to make sense of it in a helpful way. All those aphorisms about failure and success, the more times you fail, the more you learn, blah, blah, that just everybody seems to agree with because they assume it’s about innovation and success at work, well, in my experience it’s no different with relapse. It’s what you do with relapse or these “failures” that counts, not necessarily how many you’ve had. Do you learn from them? Do you try a different strategy? Do you acknowledge that the present experiment called “your life” may not be working? Those who learn from repeated failures have a better chance of longer term success than those who don’t. (If at first you don’t succeed, try, try, again.) I began to think that the dire warnings about relapse were pharma’s ploy to get people on board toute de suite with their meds and to stay on them. Relapse is awful, speaking only from my experience as a parent, but it’s not the end of the world if viewed in the right light. I did everything possible to keep my son out of hospital before his third three month hospitalization. (Each time he was hospitalized, he was actually in better mental shape than the previous time, but that kind of information doesn’t get included in the stats.) I’d prefer not to live through another hospitalization. But when my son was hospitalized for the third time, I got it. I thought, this is a learning opportunity. When he gets out, we’re going to do things differently. And we did. Relapse can be seen as an opportunity. It’s all in what one believes, I guess.
I like what you say, here, Rossa. I learned to see our evolution as a spiral–we, all of us, come back to our issues, inevitably, as we grow, but in an at least slightly different way. Creative (healing) processes are not linear.
Years after I cleared my head and found my grounding, I’d tell people (this is how I put it for myself), “I healed from the mental illness I was experiencing and no longer live with a diagnosis and medicated.
One person said, “How do you know it won’t happen again?”
And I said, “Because I changed my entire perspective about myself, my environment, and my life. I changed my neural patterns, strengthened my nervous system, and I no longer believe what psychiatrists had concluded about me when I gave them my information. They were wrong. I see that very clearly now, and waking up to that is when I started to heal.”
This conversation took place about 8 years ago, which is 5 years after coming off the drugs. The effects from the drugs lingered for longer–on and off, also in a spiral–but eventually that morphed into simply releasing toxic energy from my system. Detoxification is a normal and necessary process for us, in general.
In addition to the drugs, I had to also detoxify from the effects of being stigmatized and discriminated against. My solution to that was to be WAY more discerning about the people I trusted and hung out with.
I’m out of the mainstream now, and never been healthier. A toxic world makes people sick. I found it necessary to make changes in my location. Rural, natural living is much more desirable than the urban jungle I was in. That’s a sick society, draining for all concerned.
Healing is about change. So if we are really healing, things are changing, and it is evident. No guesswork involved.
Oh yeah, I left out the most important ingredient–I learned that personal growth is really about increasing our capacity to love, forgive, and feel joy. Despite anything, I learned to be in love with life, warts and all. Life is a highly creative adventure, if we can allow ourselves see it that way.
Really, we each choose how to fuel life, the energy with which we drive it. That’s based on our emotional landscape, how we respond to things. We can experiment with this, see what works best for us. Different responses will bring a variety of experiences and outcomes.
I think we get distressed when we can’t figure out a framework for living, that can be chaotic for us. Learning our own truth and how to live by it is something to strive for, imo, as it is what gives us our personal power, and also what brings inner peace.
I like that. When we get distressed, we can’t figure out a framework for living. Can we also turn that one around? When we can’t figure out a framework for living we get distressed.
The way you want to turn it around is actually what I did say–again, “I think we get distressed when we can’t figure out a framework for living…” in that having a framework or philosophy by which we live reduces stress (stops downward spiral and stuckness) because when we do get stressed out, we apply that framework to our situation, that’s what it’s for. So as long as it is working for us, it is like a net, so we feel safe and connected, no matter what happens. We can always apply our truth to the situation for clarity and grounding.
If it doesn’t fit or work out that way, then it’s time to expand our framework, shift perspective. Otherwise we’re trying to fit a square peg in a round hole. That would mean healing and personal growth, letting go of something that no longer serves us-beliefs, resistance, blame, anger, etc. That lightens us up considerably and takes us to a nice shift in perspective.
As we grow and evolve, our beliefs are challenged, so we want to check in with them. That’s what I would call having a framework for living. I think that’s a really powerful and all-encompassing tool for support in healing, personal growth, change, transitions, and transformation–including manifesting good experiences for ourselves.
So when we are in distress and don’t have a framework to apply in order to make some kind of sense or meaning from a challenging experience, then it is time to explore new beliefs, perspectives, philosophies, etc. I believe that’s how we can best streamline chaos and achieve clarity for the purpose of moving forward. Otherwise, we get stuck in that distressful experience, without direction, which is EXTREMELY stressful.
Life frameworks and philosophies work if we actually apply them to our experience, rather than simply live with these teachings in our heads. We have to live them, to achieve physical cellular resonance with our philosophy–aka walking the talk. That’s how we achieve synchronicity.
I do a lot of research and learning about this on YouTube. There are tons of teachers out there who talk about this, with their own particular spin on it–Matt Kahn, Esther Hicks, Amanda Ellis, Kimberley Jones, et al, to name a very few. If you search Law of Attraction or Ascension 2016 or Galactic Federation of Light, there is a lot of channeling of these issues and frameworks.
Eventually, we all personalize what we might learn from others, based on our individual and unique experiences, if it all rings true. So really, it is our own framework we discover and define, as per our spiritual individuality and desires in life, but at least we have many examples from which to choose, to check out their resonance.
My very best example of a ‘relapse’ would be just a few years after I got off the meds, and I started doing theater. I was working during the day, and rehearsing at night. I’d never been an actor, but this was my way of growing, and fortunately, people did enjoy my work on stage, so I was lucky in this regard, and this became my way to apply all I had learned, to be face first in the world, and to heal all those triggers, naturally.
Just as I started this big musical in which I had a lead part (and I was petrified, but determined), I had a bad rift with my church, and my mother in law passed away, which really hit my partner hard. I was very sensitive, just coming back to life, and it all exploded and I wanted to drop out of the show, it all became so stressful.
Long story short, I did not drop out and went on to get great reviews. I also did NOT go back on meds, nor to therapy. I called one of my teachers and she did a 30 minute reading and healing, and then I went back to rehearsal, dazed but good enough to continue. I just kept applying all the new stuff I had learned, kept grounding, coming back to center, doing my Qi Gong, etc. By the end of the run, I was in great shape, clear, happy, and on to my next show.
That was my one ‘relapse’ (about 8 years ago) and since then, I haven’t had to worry about it because that whole experience re-wrote my neurons, to where I began interpreting everything very non-personally, from a neutral space (not past time trauma) and from a really high spiritual perspective, present time. And that’s it.
Not only does it work every time, but those experiences have really dwindled because I lighten my energy on a daily basis. That’s my framework for living. Same with my partner, we both apply this and we’ve been doing great for a long time now, normal ups and downs notwithstanding.
I also went through a year long legal battle with the system, but I never even considered relapse, I felt empowered for the first time since having entered the system. That was enough to keep me in balance and on track. I was pissed, and that was normal. No one questioned me about it, nor blamed me. It was completely reasonable and justified. Thanks to being credible, there was nothing to stress about, really. Finally, I was heard, and that was enough to uplift me. I never doubted my reality again after that, and woke up to how people cause one to feel doubt. Pure stigma.
Rossa
Great comment.
Relapses back into extreme states, or into similar levels of psychological distress, such as addiction, are NEVER something you WANT to happen, nor are they positive when they ARE happening.
However, while they ARE happening we much switch our thought process towards trying to find the best ways to turn a BAD thing into a GOOD thing. That is, how can we extract every last lesson and piece of knowledge from this CURRENT experience so as to create conditions to minimize the risks of FUTURE relapses, or actually develop the learning curve to a point where PERMANENT recovery and/or abstinence is achievable.
In a sense we are searching for perhaps the final piece to a puzzle for how to develop the mental and physical coping skills to survive in a very stressful and unjust world. Of course this is an on going process that continues until the day we die, because both the world and our relationship to it is in a constant state of change.
As this constantly evolving goal is achieved (within each moment) we might someday look back, in RETROSPECTION, and say “such & such relapse was a GOOD thing because I/we were able to learn this important piece of knowledge and/or develop this critical kind of social support system so as to make our overall human experience together more productive and worthwhile.
Rossa, I hope I have added some additional meaning to your insightful words and experience.
Richard
Perhaps the terms ‘relapse’ and ‘extreme states’ are just too highly subjective to really ever be universally in agreement about. Different cultures and sub-cultures (including family cultures, as well as medical and psychiatric cultures) would have different takes and meanings regarding what constitutes a ‘relapse’ and what constitutes ‘an extreme state,’ all totally dependent on the standards of that particular culture.
Some cultures have more permission for personal exploration than others, without being averse to any aspect of it, and would in fact validate every single experience of a process; so that would be more inclusive than considered ‘extreme,’ which tends to be a marginalizing term.
We can certainly choose which culture is more aligned with our sense of self, as it is our sense of self which will always trump cultural norms. Otherwise, communities will never evolve forward and grow. We tend to get stuck in our old beliefs when we don’t understand others, and tend to go into judgment, rather than learn and grow from that which we do not understand, which I think is too bad.
In fact, a lot of the professionals I encountered as I traversed the system, were, from my observation at the time, in EXTREME states of denial. See? Totally subjective. With things like this, it can go both ways, so really, the truth of the matter is way beyond this illusory duality.
such & such relapse was a GOOD thing because I/we were able to learn this important piece of knowledge…
This is what has been called a “nervous breakthrough.”
You have, Richard! I’d like to see someone here at MIA write a post on Relapse: Chronic case or golden opportunity? Your speciality is addiction, I believe, and perhaps you’ve already covered the topic here before, but Sandy made an honest statement about how the medical community (and therefore family members) views relapse, and I think we need to challenge this. How about a post from you on this?
I agree Richard and Rossa, and see my post below. Reentering emotional difficulties should not always be seen as a bad thing but rather as an opportunity for working through to a better state. It is pathetic how black and white most psychiatrists’ thinking is on this matter.
Thanks Rossa. I’ll think about that, but I may other fish to fry when I can focus enough to write again. Maybe you should take a shot at it.
Richard
To jump in to this valuable discussion again –
I appreciate the reframing Rossa and Richard have put on this. I think that can apply to some people I know. But a situation I sometimes encounter is that the person at the center of concern does not agree with the frame of “relapse” or the frame of there being any difficulty at all. But there is a difficulty for those around him. So a person is choosing to roam the streets of a frigid city, poorly clad at all hours. Or a person chooses to call the police and family at all hours due to some perceived problem that others do not perceive or even understand. But the notion of understanding or making meaning – which I do not mean to reject! – is just hard to apply because this implies there is an exchange between the people involved but in these instances, the person has no interest in having any exchange. And time passes and people worry. If we do not address or at least acknowledge this kind of predicament, I think we risk talking past one another with each side thinking the other one doesn’t get it (or thinks in black and white terms as one commenter suggests).
If one person who is comfortable with themselves and how they are taking their life journey is making those around them uncomfortable, to me, the meaning here would be that the designated ‘scapegoat’ (in that they are targeted as the source of discomfort in others) exists to make others take responsibility for their own feelings, and not put it on others. That is growth and evolution, through deeper understanding of ourselves and the reality we project onto others.
We can only make ourselves uncomfortable, with our thoughts, projections, and introjections. Therefore, we can only heal ourselves by changing our thoughts. That’s always in our control, to choose our focus and perspective.
Families and communities are being called upon to shift perspective in a pretty radical way now. Why should one person be held responsible for the feelings and reality of an entire village? Truly, that is giving one person tremendous power over the entire community.
No one can control the worrying of another. People can learn to trust rather than worry about others. That’s a huge shift in our energy, and eventually brings relief. Worrying is like praying for that which we do not want to happen, because we dwell and dwell and dwell on it, creating fear in our minds and bodies. That’s not at all healthful, nor conducive to a positive experience.
Sandy, to clarify, the “reframing” had to come first from me and my husband. I think it’s important to say that the person who is going through turmoil hasn’t got the capacity to “reframe” anything about his life during a period of great stress. My son certainly wasn’t in any sort of shape to do that, and he didn’t see that anything was wrong with him, so he’s not much different from people wandering the street, but with one important difference. His family. He lived with us. Not easy on our spirits to feel alienated from an adult living under our own roof. We wanted to learn how to build a line of communication that was inclusive of him because we were learning that this is what recovery is all about. You can’t build that line if you are not in daily contact with your “loved one.” When I hear about homeless people, well, it’s obvious they’re not living with a family member, lol.
I’ll go one step further and say that the family probably IS the reason the person is living on the streets or in sub-standard social housing because they haven’t learned how to talk and walk recovery. They are still seeing the problem as a medical one. And, according to at least two research studies, if the problem is cast as a brain illness, the more the person will be stigmatized. By their family, it goes without saying. Loneliness kills. Imagine if your house burned down and you didn’t know there was a fire station just around the corner. This is how ill informed families are about what it takes to help someone recover. It is really only in the past decade that the word is getting out about how to recover. It’s not going to happen over night. It takes a lot of commitment on the part of others to not alienate the individual further through their own ignorance. I’ll plug Krista McKinnon’s excellent course, Recovering Our Families one more time. http://familieshealingtogether.com/courses/recovering-our-families/
It’s not a meds versus non-meds problem, because even when on meds a person can be as difficult to communicate with as a person not on meds, except perhaps not as “stimulating.” Recovery is complex and there are many factors involved. You can be on meds and if you accept the medical model unquestioningly, you may not even think that there’s a non-medical reason why you became psychotic in the first place. Or, you can be on meds and also do the hard work of finding out what happened to you. Unfortunately, mainstream medicine usually only presents the first option to the patient because it believes mental illness is a brain problem, not a psychosocial one. In order to test if you are getting more resilient or more knowledgeable about yourself, you might/will probably have to start tapering your drug and see what happens. If you relapse, well, climb back on board and try, try, again. I’m convinced that families need to be educated that relapse may be a necessary part of growing. If they do so, they’ll become more resilient, too. There is no reason for them to feel the need to reject the medical model in its entirety in order to learn reframing.
Sorry to keep jumping in here where I’m not feeling terribly welcome, but oh well, this is activism, so that comes with the territory.
I just want to say, Rossa, that in my experience, the really bad and destructive stigma comes from a person speaking their truth, and it rubs others the wrong way. That is, by far, the most powerful stigma I’ve experienced and witnessed, and it’s experienced by those who stand in their truth regardless of the resistance around them.
That’s when all the mind games start, and it’s really tough to discern what is real and what is illusory projection. And it’s extremely stressful, this is born from stress. Everyone has to shift, without a scapegoat, for healing to happen.
The IP (for lack of a better term, so this is my identifier) is leading the healing, because they are coming from pure authentic spirit, and not from fear or victim identity. They are trying to walk their path of truth, but it keeps getting sidetracked, for any number of reasons.
When I work with families, I look to see where the ‘family patient’ is encountering resistance to their own healing. Sometimes, it is inside of them–their own habits of self-sabotage (which can heal and shift) and sometimes, the dominant force of resistance in the family dynamic fearing change. That is vital to discern for things to get unstuck.
Regardless, however, it is vital for the one who is IP’d stigmatized, and scapegoated to assert themselves and follow through. It is critical for them to know their truth. Often, families cannot tolerate such independence of thinking, for reasons having to do with surrender and letting go, giving others permission to have their own experience.
As the first slate in my film, Voices That Heal, says, “Stigma is born in the mindset of fear and discrimination, and occurs when social norms are challenged.” A person’s ‘different’ way of being, believing, thinking, acting, and talking is what challenges the social norms, and when hidden feelings and beliefs of others come to light, usually in the form of discrimination.
How do we respond to this challenge of our beliefs? And how do we embrace change? These are all questions we can ask ourselves, and that will bring us a higher degree of self-awareness, that can then translate into healing for all concerned, for the entire system.
I only could follow through with my healing when my partner faced himself, saw his contribution to my stress (his projections and double-binding), and finally cut the crap and shifted into his real self, rather than his defensive self. He took his queue from my healing, and now I am his teacher and guide. He loves it, feels well cared for and partnered with.
Takes two to tango, and it takes more than one person to create what we are calling ‘mental illness,’ ‘psychosis,’ whatever. I think it comes more from people driving other people crazy, literally, rather than from isolation. People can exist very peacefully in solitude, if they are comfortable with themselves.
Transcendentalism is for real–nature, solitude, communing with God, etc. It’s a really nice respite from having to deal with others’ projections, and only focused on what we desire to create. Seeing ourselves through they heart and mind of God is quite revealing, and we all have this power, because we are all part of that God-energy that is everything, like it or not.
it takes more than one person to create what we are calling ‘mental illness,’ ‘psychosis,’ whatever. I think it comes more from people driving other people crazy
???
Rossa, Your message, and perspective is invaluable. I look forward to reading the book!
We’re running out of threads here, Alex. Of course you’re welcome here. Some of us are just parsimonious with with our valuable thread count! From what you say, I don’t think we disagree at all. Your input, and the input of many other survivors here on MIA, is different than how someone coming at psychosis as an outsider, or a parent, would express themselves. Most parents are not poets or artists, we are, by and large, practical people, conditioned by carpooling, bill paying, all the boring but necessary activities we do for our children that grind us down eventually into people who no longer understand the creative impulse, if we ever did. I think a lot of survivors presume that the stigmatization by family members started BEFORE the breakdown, because they were scapegoated by their parents all during childhood. Consider another scenario, that the stigmatization can begin for many AFTER the breakdown, when nobody around them understands the creative impulse driving it. I’ll sign off now, because soon Sandy’s post will no longer be visible. Have a great week-end!
Rossa, I came back to check out your comment and glad I did. I like the point you make, that these are different worlds we’re talking about. I guess we’re trying to bridge them, for deeper understanding of each other, and our realities–which is great of course to aim for, but indeed, there are challenges along the way.
I’m from the world you describe, the mundane world of debt-slavery (as I’ve heard it referred), and all that. In my case, when I began to experience other dimensions of reality, it was a shocker, because I knew that I was on my way to transformational healing, but I did not know how to let go of all that was familiar to me. That’s quite challenging to face the void of the unknown like that. I had to learn to embrace uncertainty and unfamiliarity more than ever before.
That was a several years’ journey for me, that involved coming off psych drugs and all the rigorous and wondrous after-effects of such an unfamiliar and non-understood process. This was in 2001, so I did not know of anyone, anywhere who had done this before, so I was on my own with coming off nine meds. Whew, that was a whopper.
I faced learning a whole new way of being and navigating the world.
And yes, it connected me with my artist self, through and through. For that I’m very grateful. I’d been a retail manager for almost 20 years, with a lot of material things, and a stack of credit cards, to show for it. And, of course, a lot of stress, that came with the territory, it seemed. The healing journey I took was most meaningful because in the end, it meant absolute freedom, in every respect.
I’ve had these conversations with my mother, who sounds a lot like you and some other mothers on here. We were totally suburban, she drove the carpool, my dad was a physician, pillars of the community, yadayada.
She told me that her worry and frustrations with me while I was attempting to heal were burdensome for her. Of course, I told her that I felt oppressed, unsupported, and judged by her, and that she was seeing me in a way that I neither wanted to identify as, nor did I feel compelled to. It was not me, but a fabrication of what she needed me to be, to play the role in the family she had intended for me, to fit the schema (which was extraordinarily dysfunctional).
So we had it out, forgave each other for wherever we felt the other was out of line, each of us owned our part in it all, we came into present time with each other. And now we’re good. I went to see her last summer for the first time and years, and we had a blast together, as we can sometimes do, when she is not angry and as a result, being kind of demeaning to me, which I don’t tolerate, and she knows it. I set boundaries with her all the time.
It’s not that I really care what she thinks–at my age that really can hardly affect me any longer. It’s just she’s really an extremely judgmental person and I like her to know when she is projecting, so that she can align herself with reality once again. She’s been really good about it, very open, for which I’m grateful.
That was after years of her resisting and resenting me for calling out abuse in our family. But I was right, and we all know it now, so each of us has been able to heal.
Except one family member who absolutely refuses to see his shadow and can only project, project, project, so he’s quite stuck, but the rest of my family has totally come on board with all of this. That’s the result of having made my film and sending it to them before publishing it. I wanted that highly avoided conversation to happen once and for all, and it did, whew.
Families heal when we allow truth to come to light, as hard as it can be to face our shadow. But I do think it’s a family effort to be made, not just one person. We all have a path of evolution for ourselves, regardless of our personal reality. That is universal, I’m sure. When we each take our journey, then other are free to take theirs in peace. That’s my take on it, in any event.
Rossa and Richard,
There is another viewpoint about “relapse” – although it’s a strange word to use for what are different degrees of severe emotional-perceptual-functional problems at different times. When I read Vamik Volkan and Bryce Boyer’s writing, on their approach to intensive psychotherapy of psychotic states, they do not see the renewed expression of psychotic symptoms as inevitably a bad sign but rather as an opportunity and something that can be worked with creatively and productively. In fact, Volkan tried to get his “schizophrenic” clients to regress to a point where, in the contained environment of therapy, they could work through the feelings of terror, rage, and despair that were driving the psychotic symptoms… and most importantly, change or mature the archaic internalized all-bad relationships, the cluster of heavily negative-tinged introjections, that form the core of psychotic states (if anyone who works with psychotic people doesn’t know this object-relations approach to psychotic states, I strongly recommend learning about it).
This approach was very successful, as the large majority of initially psychotic people who worked with Volkan and Boyer for some years recovered to work full time, be completely nonpsychotic, have friends and often have families. About 20 or so of these cases are reviewed in the books The Infantile Psychotic Self and its Fates (Volkan), The Regressed Patient (Boyer), and Characterological Treatment of Schizophrenic Disorders (Boyer).
From a broader social perspective, focusing on “relapse” shows how far most psychiatrists are from having a holistic view of people in their social environment. A big part of the focus for recovery in someone who’s had psychotic experience should be positive life goals including work functioning, school functioning, exercise, interpersonal relationships, hobbies, and whatever the person wants. Psychiatrists are usually doomed from the start because they believe the person has an illness and have no real training in how to work with psychotic states dynamically and interpersonally. Even though I’m a layperson, given my personal experience with extreme states, all the reading I’ve done, and the fact that I don’t subscribe to a disease model (therefore approaching people from a position of curiosity, compassion and hope rather than needing to manage their disease), I have little doubt in saying that I’d do a better job of supporting psychotic people than most psychiatrists.
The author writes, “I have had the great privilege of learning about different ways of “being with.” Soteria, Open Dialogue, Intentional Peer Support while all being extremely valuable are not helpful for everyone. To some extent, every so-called alternative program of which I am aware is self-selective to some degree. By this I mean that those who are involved in these programs admit to having their own limits. Some of them by design only work with people who come to them. Others chose carefully who can participate.”
Open Dialogue is the mental health system in Western Lapland. This is what is on offer to everyone. I therefore fail to see how it is self-selective – or even what they means. It is what the state offers and there is no other choice, or that is what I have been led to believe.
Everyone has thier limits. Every system has it’s limits. Conventional psyhiatry as practiced by psychiatrists in the USA have it’s limits. I am not sure how this relates to the studies, and the various ways they have been interpreted, that the author is commenting on. Soteria and Open Dialogue use psychiatric drugs but they both used them less and allowed people to be in more extreme states than conventional psychiatry does before using them – or that is how I interpret what I have read.
The author also writes, “But in my world, it seems that psychosis is tough. It is not infrequently scary. ” This leaves me wondering who is scared of what? Those questions take me towards the UK psychologists ideas of Formulation, a posh way of asking people what are your problems, what caused them and what might help? My guess is that who is scared of what are questions that arrise in the conversations that happen in Open Dialogue sessions or happen when staff, “Be with,” clients in Soteria houses.
So for me the core question is whether the fear and confusion implied in the statement, “psychosis is tough. It is not infrequently scary,” is a medical matter. If not then perhaps I might have to stop using the term, “Psychosis,” as it think it means sick in the head (psyche – mind, osis – medical suffix meaning disease, morbid state, abnormal increase)
“Psychosis” is certainly considered to be “mental illness”; the most extreme form, actually.
And a handy little bit of slander to stick someone with when they dont like being treated like a pet dog.
three minutes, lives with wife, went to X college, diagnosis psychotic, drug him.
One might imagine that it may have been a situation where it was obvious that I was “psychotic”. My three minute diagnosis came after I was respectful toward this psychiatrist/ordained minister up to the point where he couldnt turn his head and ordered me to “sit there”, at which point I explained I had a bad back and was not going to be jumping around chairs for him. In which case I was to be incarcetared for a weekend. My failure to engage collaboratively was about to result in me receiving the ‘dv package’. Still I guess these Christians see all of us Muslims as being wife beaters, so violating our civil and human rights in such a manner might be easier than being labelled terrorists.
Might have been nice to have been informed by these people that I had been drugged with benzos without my knowledge before they handed me over to police to be questioned too. Rather than engage collaboratively with the person who drugged me to conceal this offense. 6 weeks of collaboration, remove the documents demostrating the drugging, and hey presto, im telling my advocate that I was drugged without my knowledge, and looking like a paranoid delusional. Health care?
John,
I like your comment; I feel that extreme experiences like delusions, hallucinations, bizarre fears, paranoia, voices, etc. are not by nature scary to an outside observer… it depends on that observer and how they interpret the experience reported by the experiencer. One can consider “psychosis is not infrequently scary” or even “psychosis is tough” (although often true, I feel) to be one opinion, not an absolute truth or an essential quality of psychosis.
I have known several people who’ve been psychotic including my own father, and don’t have the reaction that it is scary. Rather, I usually have the attitude of curiosity, empathy, or even fascination. This is partly because I have experienced extreme states myself, and because in every case I have been able to find out by talking to the person some way they attribute meaning or order to the experience. I always look for what meaning the person attributes to their experience and also for how the “symptom” might relate to past experiences and therefore be a form of transference. In almost every case of a “symptom” (this is only 5-6 people, total) it seems there has been a history of some trauma, fear, loneliness or alienation in the background which is related to the so-called psychotic symptom, although this may not be evident initially.
I remember one young woman I came to know years ago who had an imaginary companion “ghost” that spoke to her, saying good or bad things depending on the situation and the stress level. It looked like a little Casper (from the ghost cartoon) and would follow her around as she imagined it, saying encouraging things at some time, offering advice, and at other times harshly criticizing her and telling her she was evil. And this Casper represented many things, in particular the wish for a reliable friend/companion/parent and also her “dead soul” that had been lost through many years of trauma in her family.
The way we figured it out, it was actually a self-component of her (it was like her speaking to herself internally and animating the ghost, but not being aware of doing so consciously… as if part of her mind had broken off to become autonomous and animate this alter… in other words it was like a subtle form of multiple personality syndrome, that allowed her to trick her mind into feeling less alone and afraid because she created this ghostly companion to fly around with her everywhere). Over time it became less present and more integrated into her main self. This was an example of a psychotic experience that is not scary but incredibly creative as a means of psychic survival, and touching.
Just an FYI, John, my psychologist, and all subsequent psychiatrists, claimed a religious dream query, all my thoughts (some odd and scary, due to a synthetic opioid prescription, and the fact 9.11.2001 had just occurred), and all my gut instincts as well, to be “psychosis.”
So, in practice at least, “psychosis,” as claimed by psychiatric doctors, may often have nothing whatsoever to do with a “medical matter.” Other than, doctors denying the reality that opioids can cause odd thoughts, and are apparently ignorant of the fact that our entire country was being terrorized, just after 9.11.2001, by our own government and mainstream media.
“Psychosis” is unprovable, and just a defamatory stigmatization, used to mandate psychiatrists put a person on neuroleptics. A drug class known to cause actual “psychosis,” via the central symptoms of neuroleptic induced anticholinergic intoxication syndrome.
I do so hope you think twice, and “stop using the term, ‘Psychosis,’ as [I] think it means sick in the head (psyche – mind, osis – medical suffix meaning disease, morbid state, abnormal increase).” It’s semantics used by doctors, not an actual illness, based upon my experience.
So I have a question in complete alignment with the title of this article:
If a tree falls in the forest and people go out of their way to pretend they didn’t hear it, does it make a sound? Oh yeah, like a sonic boom.
I’m having a vision: prepare for change. The trees have been heard. And they are nowhere near fallen.
Thanks, Sandy, for this amazing blog & discussion. It did not disappoint!
I was struck by the description of the “placebo group” in that Northwick Park study: More likely to have a “relapse.” But also more likely to get a job. Who is better off in the long run: the person who avoids troubling “relapses” but never finds their place in the world? Or the one who gets to have a life, even if troubled by occasional “spells”? Of course, getting a job does not equal getting a life, and many people with no paying job have very meaningful lives. But as a rough indicator of who is “getting a life”, working vs. not working seems pretty good to me. And if so, the same drugs that may keep you from “relapses” may also keep you from getting a life. I know which group I would rather be in.
Still, there’s so little support for people trying to do without the drugs, and so much alarmism spread by professionals, that even really sharp, independent patients can get scared off. Recently I had a chat with a “peer counselor” who was on antipsychotics. As we talked, the litany of side effects he was dealing with piled up, from involuntary tics, to major weight gain, to fatigue and “fogginess”, to flashes of intense irritability. Yet he was afraid even to lower the dose, let alone taper off. Why? He’d tried once, and gotten a few stray “ideas of reference.” And that’s a “psychotic symptom,” so it seemed important to squelch it at all costs! Whereas the other problems were mere “side effects” that his doctors seemed to feel he could simply live with.
It seemed like such a distorted set of priorities. I know a few people who deal with “ideas of reference” fairly regularly, because they are both a bit eccentric and also deeply religious. So they get the feeling “God is trying to tell me something.” Yet they live fairly happy productive lives — and they’re not flirting with permanent tardive dyskinesia either. As one who has not been there, it’s hard for me to say — but it might be easier to learn to deal with occasional mystical or paranoid “flashes” than to cope with all the physical and mental burdens of the drug.
I’m so glad for those few professionals with the guts and humanity to help people deal with those kind of choices! Thanks, Sandy.
Thanks,Johanna- right back at you!
Beautifully expressed. You zeroed in on a really important point. The placebo group in the study had more relapses but were better able to get a job than the medicated group. Your explanation for why this might be was spot on.
I suggest we stop using the word “relapses”. There is no science behind this term. It’s the subjective opinion of an outside observer that a person’s “symptoms” or level of disorganization/suffering has reached a severe enough point to be considered a “relapse” of their “illness”.
Relapse is a medical term and has little place in the understanding of psychotic experience. A better term for relapse might be renewed emotional suffering, repeated challenges, “setbacks”, “regression”, or something a little more human and less medical. We also shouldn’t pretend that words like these represent something precisely measurable or knowable.
Sandra, consider stopping this usage of the word relapse, as it is pathologizing to sufferers and inappropriately medical for a phenomenon you don’t know to have a disease. It would evidence impressive humility if psychiatrists would make a change of language in this instance. It might be cumbersome and difficult at first, but stopping the medical terminology does make a difference to people.
Consider if you started experiencing severe confusion, hopelessness, terror, and rage again – which is what a psychotic episode often feels like – do you think that should be called a “relapse”? It’s just bullshit…
Hi again Dr Steingard,
This article has given me more than a few reasons for pondering some issues. you write that:
“I find that in my more traditional circles, there is often a lack of tolerance for people’s self-determination, especially when a person is following a less traveled and understood path. But in the MIA circle, I sometimes find a lack of tolerance for people who express these fears and worries. I have this notion – perhaps naive – that if both sides could acknowledge the validity of each others concerns, we might be able to move forward. Maybe if we could do this, then when trees fall in that forest, more than a few us us will be able to hear them.”
I wonder if in these “traditional circles” that the 1.6 billion Muslims who have a prohibition on the use of intoxicating substances (they are considered Haram and therefore prohibited) might be considered a less traveled and understood path? Because I found that being subjected to the threat of being restrained by a dozen people and forcefully injected with these intoxicating substances a little extreme.
It puts one in a position where engaging collaboratively can be more than a little difficult. So I may acknowledge your (and others) concerns about my “grandiosity”, I wonder if there is a better way than baiting people to violate their right to self determination.