Stories related to psychosis can be intense, and can lead to traumatic recall when a sufferer retells them and does not feel contained or believed within the relationship. Perhaps this is the reason many therapists, family members, and psychiatric wards learn to shut down the telling of the story.

Shutting down stories can be seen as protecting the psychosis survivor from unnecessarily reliving the experience and going through the distress again. Perhaps this is done to avoid a fight or yet another power struggle over reality. Activating trauma that you cannot stand to consider is a bad idea, right?

Imagine being a person who has experienced psychosis and having the entire mental health system agree not to let you tell your story as a boundary. This strategy is employed over and over again despite the fact that recipients of this kind of care often become progressively more isolated and distressed over time.

Perhaps no one in the system can imagine what it is like to experience systemic indifference to traumatic material. Indeed, is it really so impossible to believe that these experiences are real and there for a purpose? Is it really so hard to believe that the person in psychosis may have some perceptions that are spot-on accurate? Not acknowledging them can be cause for further social withdrawal, instill a sense of hopelessness, and do further damage to an already ailing self-esteem.

Trying to stay on the same page as everybody else may teach a person to suppress their experiences. While symptom suppression may decrease social attacks and ridicule, I also believe it is the wrong tact for many. Too many people suppress, isolate and withdraw from social functioning. Is it not possible to create spaces and relationships in which experiences of psychosis can be dealt with in mindful manners? If survivors can be believed by supporters, if their experiences can be credited with having profound meaning, then perhaps outcomes could be better.

A New Strategy with Survivor-Led Groups

I have come to strongly believe that shutting down stories related to psychosis is the wrong thing to do. I believe this so strongly that I have come out as a therapist with lived experience with madness. I regularly share my experiences in group therapy to facilitate group reflection and the telling of stories.

I credit the Hearing Voices Network for prompting me to take this plunge. Word of survivor-led groups achieving remarkably different results prompted me to start a curriculum for professional groups. In the curriculum, which I have turned into a training and a group therapy guide, I deconstruct what psychosis is into solvable components.

It’s true that there are times when I wonder if coming out mad was the best career decision. I have had to bravely admit my vulnerabilities, which sometimes seems to hurt my credibility. And yet I find that being an artfully unreliable narrator helps guide people to their own truth more effectively. I feel I get better results having taken the plunge.

Being out has helped me exponentially in creating specialized care for psychosis survivors. As a result, I have a number of suggestions for how to encourage the telling of stories without retraumatizing survivors in group settings and in individual encounters. Many of these suggestions are based on replicating realities that happen in survivor-led groups.

1. Eradicating Stigma and Grounding Participants

Many supporters actually believe that people who experience psychosis are fragile. It is one of the three most dominant stigmas about mental health challenges, according to Patrick Corrigan’s research.¹ As a professional, I have heard this said so many times and I am convinced that my colleagues say this because they don’t know what “psychosis” feels like. At times, simply reversing this stigma can help ground someone who is in psychosis and remind them about how tough they are to be handling such real trauma.

There are other grounding techniques that I have utilized when I sense the group is starting to feel traumatized. Often, acknowledging the trauma in the room and allowing the groups to socialize and focus on related movies, music, or art can help. If group members initiate this process, it is good to compliment and acknowledge what they are doing as being helpful. Instead of controlling the group and staying on course, collaborating and enhancing these efforts is advisable.

2. Believing that Psychosis is Happening for a Reason and Holds Truths

I already said this, but it stands to be further emphasized.

I believe that if classifying experiences that trigger psychosis as an ‘illness’ can retraumatize many, finding value in those experiences will help ground many psychosis survivors who are in distress. In other words, when the helper meets the content of the survivor’s experience with curiosity and interest, the psychosis survivor is less likely to be traumatized. In contrast, if the supporter exudes the belief that the psychosis survivor will be traumatized, this outcome will be more likely to come true.

Often the survivor leader is excited to learn that others relate to them, and has a high level of hope that others can achieve wellness in spite of disturbing material. Thus, getting naturally excited when a person is sharing details and having strong beliefs about recovery being possible helps deepen the threshold for what others can bear.

Additionally, studying different causation frameworks that psychosis survivors hold gives participants a basis for understanding how experiences that trigger psychosis are possible.

In therapy groups I have often suggested there are six styles of causation frameworks that operate in different ways at different times. Sometimes the experiences may be caused by or related to political, psychological, traumatic, scientific, spiritual or artistic factors.

Knowing which framework explains a given trigger is often impossible! However, I believe that the more types of frameworks the psychosis survivor uses to explain the triggers, the more likely that they will be able to navigate the trigger in a functional manner. Positive knowledge about all explanations helps one find the value of each experience.

The more explanations the supporter learns, the better they can help make valuable meaning of these disturbing experiences. Giving up and calling the experiences meaningless does not help.

When there is a purpose for suffering, it is far more helpful.

3. Sharing Your Own Experiences with Psychosis

One of the huge benefits of survivor-led groups is that the leader also shares their own experience with psychosis. This opens people up to telling their story because it defies the dysfunctional boundary that exists between clinicians and patients—the presumption that the clinician is ‘well’ and the patient needs to learn wellness from them because they know better.

Additionally, when a survivor leads the group and discloses their own experience it sets the stage for more sharing.

One reason I believe this works is that if group members are free to judge the leader as being delusional, they get the chance to do some projective identification testing. If they do judge the leader as being delusional and see that it doesn’t bother the leader, they will become more emboldened to take the same risks and withstand others who may try to reality-check them.

Another reason self-disclosure in survivor-led groups works is because many in the group will believe the leader’s story and support them, as that is the way they want to be treated if they tell of their own experiences. Therefore, a leader who is prepared to believe some pretty outrageous stuff in a reciprocal manner is generally appreciated by many in the group.

Whatever place the group participant may be in, the tendency is to become compelled to share. I believe that sharing breaks down defenses and helps the participant let go of the traumatically reinforced material.

4. Spotting and Sharing Related Experiences to Achieve Cultural Competence

Many workers in the mental health system might say they can’t share their experiences with psychosis because they haven’t had them. Though I agree that it can be harder to relate to psychosis material if you haven’t had those experiences of being in a crisis, I think most workers likely have had some related experiences; if they learned to identify these and articulate them it would be helpful for psychosis survivors.

If a mental health worker sits in group and understands the experiences that trigger psychosis, they will probably learn to be able to relate. Additionally, being able to relate normalizes psychosis experiences and makes it safer to disclose without feeling like others don’t believe you and don’t care. In the definition of psychosis that I have created, things like dreams, interpersonal interactions, and intuitions can trigger alternative realities. I think workers can learn to relate using those common experiences and learn to join the conversation.

I think this is a measure of cultural competence. If you can see serendipitous events and imagine thoughts that may come up from them, why not share those with the psychosis survivor? Why not think about how you might explain those experiences in creative manners? Doing so isn’t going to hurt you. It is a sign of wellness and empathy.

5. Knowing When the Story Is Really There to Test You

It is important to know when a psychosis survivor is simply trying to establish her or his right to tell the story. In the past, survivors may have been interrupted or challenged when they tried to tell their story. Some will tell fragmented stories to see if they can get away with it and keep your interest and concern. I have been known to get in there and fish for special message experiences to demonstrate that I am there with them. However, it can be important to notice when this isn’t wanted and just let the person tell their story without being judged for doing so.

In many cases, the traumatic response may happen when the test has failed yet again. Indeed, I think it is important not to be concerned about whether the psychosis survivor’s comments are accurate or fit into your reality. Perhaps it is possible for the leader to make a few inaccurate-sounding comments themselves. This helps normalize and permit those experiences and paradoxically challenges the psychosis survivor to question themselves.

This is not to say that there is not a time to challenge an inaccurate comment that is made about you; there is a point where this can be effective. But first you have to repeatedly pass the tests. And acknowledging that you don’t understand everything about yourself and that they may be seeing something you are not aware of can help put off the challenge until the test is passed.

6. Bringing Other People or Situations Into the Discussion

If I am afraid that a person is going to get triggered by sharing their psychosis story because the group is inattentive or emotionally absent, I may try interrupting and identifying a triggering experience the participant has referenced and ask other group members if they can relate to the experience. If I am not in group, I may think of a similar experience I have heard before and share that experience to prove that the person is not alone. Usually, at least, I can relate to the triggering experience and share a story. This not only prevents the participant from feeling quite so alienated, it reminds them that others can relate and deepens the support in the room.

Likewise, if I am able to listen and discern some conspiracy ideas that might explain some of the triggering experiences and I fear retraumatization, I may propose that the group talk about that particular brand of conspiracy and how it really is possible. Again, this may help the participant feel like they are not alone. Group conspiracy talk is another way to deepen the threshold of what the group can tolerate and invite stories.

With other people relating and participating, the person telling the story is less likely to be retraumatized and may feel more supported. Then, it is a great idea to return to the story and hear it out intensely without having need for reality tests.

7. Addressing the Fact That You May Be Recording What Is Said

In many countries where the Hearing Voices Network has flourished, such as England, the Netherlands, and New Zealand, socialized medicine enables support groups to be funded outside the system where there is no need for clinical notes. This also helps create a sense of safety that invites disclosure.

Indeed, if group records are going to be taken by the facilitator for reimbursement purposes, that needs to be addressed in the room, identifying the potential for conspiracy.

Letting the participants know what I believe about the notes and the potential for them to be used in an abusive manner without my knowledge is a strategy I often employ. I point to computer screens and light fixtures and suggest that if they can put cameras down peoples’ colons, they can certainly bug the room without my ability to protect the group participants. I believe it is a disservice to promise a psychosis survivor that their material is safe. We are not in control of their ideas of reference that may be confirming unsafe realities. At least when the helper acknowledges the limits of their power it validates the concern.

When I document what takes place in a group, I also note that I have used my own lived experience to crack open stories. I tell participants that I do that. I think doing so demonstrates integrity and clarifies that the note is not written with the intent to do them harm. I also think doing so reduces stigma of the chart reviewers and takes away the perception that the helper will turn on the group participant and abuse power.

It is ideal when these issues can be avoided, but I also think it is possible to address them if you have to take notes in order to bill in the health care system.

Specialized Care Is Necessary

I believe that utilizing these strategies and other well-documented efforts of the hearing voices movement can help clinicians grow and come to a point where they can listen to stories of psychosis and contain them just like survivors can. I think that people who choose to specialize in this type of care need opportunities to grow and learn to contain such stories, and that survivors need opportunities to become specialists and lead groups themselves. Specialized care is most certainly needed.

The post Seven Strategies to Use that Help Avoid Retraumatization While Working with Psychosis: appeared first on Redefining "Psychosis".

With Upcoming Program Closures Announced, How Confident Should I Feel?

A few years ago, a co-worker said, “We could come into work tomorrow and the job might not be there for us! That’s why I always try to put family first!”

My job of fifteen year was there for me before I got married and gained the sense of support that I somehow seemed to lack prior. It dug me out of poverty!

Perhaps my coworker said what he said because he could see how committed I was to the job. Many colleagues notice that I am driven to go the distance for our program participants. I try to disclose my history to most. I know the grapevine still exists.”

Perhaps some coworkers have learned to respect the lived experience that makes me feel passionate about the work I do!

Regardless, right now, the program’s budget sits in the executive management’s hands. They have announced that they are going to have to close programs to balance the budget. Therefore, I find the words of my coworker playing in my mind.

Recurring Dreams and Anxieties:

There have been a lot of nights over the past fifteen years I have awoke to recurring dreams of being asked to leave my job early. Often, I am forced to move and try to start over again working for much less money. Some nights I am sleeping in shelters and riding bikes to interviews. Others I have some cushion and my wife behind me. Maybe I start out with enough money to buy a house, but have to work a low wage job.

I may be a licensed professional with twenty-five years of experience, but clearly the thought of finding a new job is very intimidating to me. I have published a memoir along with hundreds of posts, many published on professional sites, about my mental health.

Perhaps it makes sense that a part of me is afraid that I will never be able to find another job again.

Eighteen years ago, I thought I was a targeted individual and under state surveillance via a mafia entity. The only job I could get was an arranged job at an Italian Delicatessen. This lasted over a year and was extremely difficult. At age thirty, I had to bike twenty miles a day and take the rails for two hours just to get gaslit and harassed by teenage co-workers from wealthy districts.

Signs of Getting Scapegoated Still Exist!

With fifteen years of experience I am one of the most tenured staff in the union, and yet I frequently find my work scrutinized because I have a different perspective. Maybe this triggers my sense of paranoia. Even when a client responds affirmatively and shows growth, I may get challenged.

I have written my own therapy platform to support what I do. It is significantly different than mainstream treatment. Although many colleagues will acknowledge that my presentations are impressive in person, in public there is silence when I am scrutinized. I don’t blame others. I am not always able to disagree without hurting others. But still I am sensitive.

I speak at local conferences and agencies to train others with my therapy platform! But on the job, I still experience doubts and challenges. In fact, this week it was particularly bad.

Premonition?

Earlier this week I got a rare chance to talk to my manager as I was negotiating a paid role for peer counselors on the unit. I let my manager vent and supported him about the threat of programs getting cut. At one point he said some people with a lot of tenure might get cut. I walked away wondering if he was referencing me or himself.

That night I woke up screaming. A long dream through which I constantly evaded death finally ended with someone ambushing me through a doorway with an odd-looking shotgun. I was shot as I reached to grab the barrel.

I woke up the next morning convinced that I was going to lose my job to the point where I processed this as a real possibility. Although I have a clean record and a union job, the potential of trumped up complaints keep me in fear.

Shamanic Processing:

Back when I was working at the Italian Deli, the only way I was able to get employed again was to maintain the faith that it was possible despite the potential of surveillance. I went to many interviews without getting hired.

I thought about another job I have had my eye on that I have recently heard is hiring. I thought about the potential of a private practice. I thought about a long-time dream of mine, getting another grant to help create an outreach program.

I told myself that if I am frustrated that I am not supported at work, that maybe it is time to move on.

I remembered that I believe in a power that is higher than the CIA or the mafia. I used the belief in this higher power to remain open to the many potentials that a job change might mean.

I found myself thinking about how Malcolm X knew he was going to be assassinated and kept on doing what he was doing without letting it make him furious. I thought about these things and worked and worked my way through another day.

Managing Stigma with Grace:

Part of leading the life we are meant to live means being awake to all the complexities, twists, and turns that life brings. Now, thanks to my understanding of life’s messages and cues, I can be prepared for what is to come.

Instead of being victimized and scapegoated, I chose to have a good day.

Clearly the power of stigma still lives inside of me and the wider society. However, when I am wise, I can benefit from the experiences.

I choose to put the energy out into the universe that there is a plan for me. This takes the sting out of stigma and is key to overcoming it.

I am a vessel! I give what I can and I pray to get what I need in life.

I will continue to serve to challenge stigma in this way in whatever capacity that opens up. Maybe we will be okay. No matter what I will find a way to maintain my work.

I will remain hopeful and positive about my colleagues and see what happens.

The post Using My Recovery from “Schizophrenia” to Manage Job Insecurity appeared first on Redefining "Psychosis".

How many parents out there would rather learn that their child had developed a life-threatening cancer, than hear that their child carries a diagnosis of schizophrenia? Historically burned-out doctors may be known to make such negative statements about schizophrenia at the time of diagnosis. If they end up being wrong, they simply re-diagnose the sufferer with bipolar; but still their comment happened. Perhaps, it challenged you to devalue your loved one.

Well, I am a mental health professional, and nothing excites me more than meeting someone else who has experiences associated with schizophrenia. I instantly know aspects of what they have gone through. It makes them a potential friend to me. Additionally, I come equipped with handfuls of tools that I think may be helpful for them. I am additionally curious to see what they might teach me about myself.

Strange thing is, I am not alone in my world view. Maybe you have heard of the international movement called the Hearing Voices Network? Originating from a psychiatrist in the Netherlands named Marious Romme and Sandra Escher, this movement seeks to normalize one of the many experiences associated with schizophrenia? The movement points out that one in ten people hear voices and that not everyone needs to be institutionalized in the mental health system as a result. In fact, the movement has proved that people who have been institutionalized for years turn out to be great leaders and advocates.

Stereotypes You Are Up Against:

Maybe, it is not fair to blame anyone for a negative response to the above dilemma because of all the negative stereotypes associated with the schizophrenia word. Many people think of a homeless person who is out fighting for their survival on the streets, posturing, or bearing a cardboard sign beneath the underpass. Those a little more informed of the norms may think of a crowded board and care home with nothing to do but to smoke and drink coffee. Still others in some states imagine a lengthy state hospital stay or transitions through hospital recidivism and homeless shelters. Of course, there will be those who think of shows they’ve seen like Criminal Minds or The Guardian. They may conjure images of mass shooting events that are blasted through the media quicker than our very apparent national homeless crisis.

Of course, as a parent or loved ones there is the stereotype of the fresh-out-of-school social workers supervised by burned out administrators who dehumanizes their patients the minute their backs are turned. Perhaps it is hard to watch this happen and easier just to stay out of it. Perhaps, some of you will shield your kids from this reality and try to take care of them on your own. Meanwhile, much of the public feels that we as a nation were kinder and gentler during industrial times when we provided mental institutions. We all know stereotypes are bad but still they exist are real and scare us.

When Stereotypes Become Real:

I can relate. I worked in mental health and greatly despised the life I saw many of my clients enduring. I respected my supervisors, but it never felt right. When I advanced to be able to work independently, I was so successful at advocating for better care, that it is part of what landed me in a State Hospital myself and discharged to the streets.

“You see Tim,” I was told in my second meeting with my psychiatrist two months into my State Hospital stay, “one time we had someone come in here and say they were being followed by the FBI and we found out they were in fact being followed. They hadn’t done much, but they were under investigation.”

Was she really referencing me? I had tipped to press of to murder and mayhem on several occasions. Yes, many of those stigmatized scenes are real, but they are only a small piece of the picture.

Indeed, I was willing to call myself autistic long before I was willing to call myself the schizophrenic that I am. It took me fifteen years of recovery before I started to embrace the ugly word because the stereotypes were so threatening to me.

Hard Decisions You Face:

Such stereotypes may bring really hard decisions. Your relationship with your loved one, the extent to which you perceive justice in social institutions, and your own stigma about mental health challenges may influence your take on what you are hearing.

Remember, that even though your loved one is in an emergency state potentially flailing around with conspiracy ideas and opinions about you, they know you well enough to know how you will respond. They may sense your response and resent it. Historical problems in the relationship may become exacerbated exponentially. For a minority, there is the potential of real violence while your loved one remains in emergency state? How are you to respond if someone you love suddenly sees you as the root of all evil?

And what will your friends say? How may they judge your parenting or partnership?  How do you handle privacy needs? How have you done this throughout their lives up to this point? Do your actions further shame your loved one? How much credence do you put into the medical diagnosis? What have you heard about the word: recovery? Does your loved one deserve the best treatment, or do they need to be treated fairly, just like everyone else? What is the best treatment? What kind of money and resources do you have to play with? How willing are you to support someone who isn’t behaving appropriately? How much do you value your own safety verses theirs?

Support for You:

Providers will generally refer you to the power structure of NAMI for support and you will mingle with others who have faced these dilemmas for years. If you are even willing to stay involved, you can use these groups to figure the most humane decisions to make.

Often, with this referral comes a clear concept of a chemical imbalance to which your loved one is victim. Suddenly you are surrounded by volunteers who give their time and expect you to do the same and support their views. Accepting the power of the illness, setting behavioral boundaries, imposing medications, and accepting dilapidated housing options may be the standard with which you are encouraged to comply.

Indeed, people and families are very different as are regions and NAMI boards. A variety of things can be helpful.

What it Feels Like to Find Meaning in Stereotypes:

When I was going through dehumanizing stereotypical experiences, I only felt victimized. I had always thought I was critical of dehumanizing practices; but still, I was shocked! Oh, how much worse that horrific, maddening, and dehumanizing treatment seem when you are in an emergency state. No one believed a word I said. I didn’t think I would ever be glad for enduring it. I could see no value to losing all my social standing and being incarcerated in impoverished circumstances. I feared for my future.

Now eighteen years later, I use all those degrading experiences which lasted two years after I was discharged to the streets to convince patients I work with that I know what they are talking about. I still feel overwhelmed when I think of what I went through, but I now can say I went through them for a reason.

I often say that if I had known that my suffering could lead to a lifetime of meaningful work, it wouldn’t have been so terrorizing. Instead of waking up in night terrors, or having urinated in my bed, I could have gone through what I went through more gracefully. And I wouldn’t have been as hard to manage for all the low wage work community that surrounded me. I mean any innocent child who saw me coming would run the other way. My negative energy was quite off-putting.

You May Be Needed to Make it Possible:

Meanwhile, my father had made his opinion known, he felt incarceration and mental health warehousing would be as good as it would get for me. Just like the treatment system at Montana State Hospital which was set up to help me adjust to poverty and disempowerment, it seemed like deep down he wanted to be right about his negative prediction. Still, he gave me a year of economic support to get it together. Though I could have got food stamps, my parents did help! And I still call them weekly. The memory of them being so concerned they were just enabling me while I was biking twenty miles a day to work a forty-hour week still burns.

Thank god it worked! I was able to get back to my career.

Can you imagine how great I feel with a career in mental health, a wife, a dog, and a home?

Many Others Can Do It:

Many others of us who suffer can do a lot of healing and earning of social empowerment by helping each other out. We can do this by using our experiences to reach others who may appear unreachable to outsiders. However, we also need to be paid for our livelihood.

Not only have I been blessed with the opportunity to find meaning from my suffering, I have seen others do it as well. I have helped employ a team of four to use their experiences associated with psychosis to help others. They outreached and learned to run groups in agencies.

What Is Missing for Schizophrenics in America?

Perhaps not everyone who suffers from experiences associated with schizophrenia naturally takes to becoming a therapist the way I have, but the mental health system really lacks a vision for sustainable roles for us schizophrenics to occupy. And I believe the first step towards creating such roles involves seeing schizophrenia as a culture rather than an illness.

In other countries the hearing voices movement has taken hold, healed many, and given people valuable roles. The premise is simple: let people who hear voices from different walks of life get together and share their experiences in un-monitored support groups. Wow, so much can come from that!

For the last eleven years I have run such support groups as a professional who openly reflects on my lived experience with schizophrenia. Like many hearing voices groups, the focus of my groups extends beyond simply hearing voices. I like to include and normalize all kinds of experiences that lead people to alternative thoughts about the way the world works.

I think these kinds of support groups help direct schizophrenics to care about the experiences of their brethren. Mutual learning and coping strategies result. Hence, letting schizophrenics acculturate and be schizophrenics is a marvelous step in the right direction.

The Need for A Living Wage:

However, in my opinion, support groups are just a start to what is needed to give the culture a meaningful role. In Oakland California, services that outreach to homeless encampments, board and care homes, agencies and shelters can invite institutionalized individuals out to support groups. Many of the people I serve off the streets of Oakland, can greatly benefit from having visitors who come and bring the support groups to them in their board and care home. Then, they might then learn to come out to groups in the community and get around some of the obstacles that keep them isolated.

An organization as such can significantly train and employ schizophrenics to develop a variety of skills. It can give them a chance to make meaning from the stereotypes through which they may have lived or to which they feared Thus a training/outreach program can help schizophrenics move on to better and better jobs.

How You Can Help Your Loved Ones Realize this Vision?

I think it is important to end the medicalized view of schizophrenia. Updated research is defining psychosis across diagnostic divides as more of a syndrome or even a neurodevelopmental disorder like autism or dyslexia. This really supports the work of the Hearing Voices Network which contends that voices and other experience do have value and carry real meaning that must be addressed for healing and survival.

Believe me, there can be complex underlying issues to address.

Thus, as you live schizophrenic stereotypes through your loved one, remember that they may be transformed into your child’s mission in life. You cannot possibly be responsible for all the meanness in the system, but you can take updated research and success stories from the Hearing Voices Movement to your NAMI meetings. You can find ways to support employment for schizophrenics through empowering organizations like the one I proposed above. I ran such a program for a year and a half until the temporary funding was done. I know it can be done.

Successful Schizophrenics:

There are many things that can help schizophrenics find roles that utilize their passions and interests. As a culture, schizophrenics are historically oppressed like heretics in western society. However, if we are to explore many traditional societies, we may find many of the skills that are labeled as an illness to be shamanic and spiritual. There are many wise traditions to explore in creating solutions.

I personally do not throw the tradition of psychiatry down the toilet. I myself utilize medication and work with others who do as well. I also admire and champion people who do not. However, we must offer solutions that help heal the localized abuses that have occurred within the medicalized system. One solution does not fit all.

Ultimately, I still wouldn’t mind using another word besides schizophrenia. I call my groups and my program special messages.

The post How to Help Your Loved One Be A Successful Schizophrenic? appeared first on Redefining "Psychosis".

I contend that the negative power of a label is a significant part of a sufferer’s condition when they experience a “psychosis” or what I prefer to term a special message crisis. Indeed, many acknowledge that words like schizophrenia, schizoaffective, and bipolar lead people to being treated as though they have a hereditary brain disease with a poor prognosis that limits their ability to thrive.

It is arguable that the degree of stigma or what a sufferer’s surrounding social world starts to think about them varies a great deal. However, I contend that more often than not, it is based on an inaccurate understanding of what “psychosis” is and means. Many sufferers object to the social definition and deny that psychosis is what is going on with them. In treatment they are encouraged to suppress their experiences especially when they are in the hospital. If they disagree with the social definition, they may be labeled with poor insight and a poorer prognosis.

This article is about how the words associated with “psychosis” and the system of care work together in irrational ways that erode one’s sense of self, dignity, and identity. I believe that stigma deserves a place at the table when it comes to defining the experiences associated with “psychosis.”

Stigma in the Community and Clinic:

Before sufferers even arrive at the clinic, they have faced social stigma in their communities or the streets. Perhaps, they were confronted about being wrong, teased, talked about behind their backs. Then others caught wind that something was different, came to test it out and laughed or taunted. Maybe the message receiver has had this happen before, or maybe finding themselves alone and rejected is new. Perhaps, suddenly some people treat the sufferer like a charity case. Of course, people who care about them may give them orders that they sense are coming from a good place. The influx of stigma to perceive is alarming and it may become interwoven into the conspiracy that is for or against them.

In the emergency clinics and hospitals, many workers believe that this “psychosis” will cause progressive social decline and brain damage as time progresses. Thus, involuntary medication is ordered and administered. So many psychiatric survivors report hearing that they will have to be on medication the rest of their lives. The best they can hope for is to return to their functioning-level baseline. Often, supporters report getting told by professionals that they would be better off learning that their loved one has a diagnosis of cancer, rather than “schizophrenia.” So many treatment providers presume that therapy is a waste of time and behavioral control in a clinical setting is as good as it gets.

Not only is there is an absence of therapy specialists who have strategies that help reduce the suffering, often, supporters are encouraged to vie to reduce their loved one’s self-determination so that they can impose consensus reality on them and correct behavior. In worst case scenarios, the mentality is that if we all ban together and work together, the sufferer will be forced to listen to us and ignore those anomalous experiences.

Perhaps the sufferers’ valid extra-perceptual experiences sense that this is going on and it only adds to their distress.

Case Study—My Real Extra-Sensory Abilities and Confusion:

 For example, when I was on the streets and walking along the highways, I could sense via intuition and energy that some people wanted to support me, and others wanted to destroy me. While I may have been accurate in these perceptions, there was confusion that resulted from this ability. I did not know whether people were presuming I was ill or whether I was receiving these sensations because I was capable of exposing mass corruption. I believed in the latter to a greater degree.

Of course, believing I was a targeted individual as such, I tested people out to see whether they knew who I was or how quickly they would pick up on my purposely bizarre behavior. If people just thought I was ill, I was safe, if they thought I was a whistle blower, I was in danger. I couldn’t ask them these questions directly, I had to feel it out.

It’s true some targeted individual or voice hearers have the skills to evade treatment and live with their secret abilities. Many can survive in fringe communities or perhaps via using substances or through family support. Those able to conceal these experiences still face stigma. Others may think they just aren’t living up to their potential. Then, they may feel ignored and stigmatized as an underachiever, rather than as a “schizophrenic.”

I was one who was unable to evade treatment. What I found was that some people presumed I was ill, and others seemed to know about my ability to expose corruption, which was significant at the time. Even when this dilemma led to a three-month incarceration in a state hospital, there were different camps. Many were trying to figure out where I stood, and there were many opinions for me to perceive.

Was my dilemma real persecution or was I sensing different takes on the stigma of presumed illness because of my erratic behavior? It has taken twenty years, a return to my profession, and pioneering groups that specialize in treating psychosis to realize that I am not alone in experiencing these dilemmas.

Seeing and Accepting the Reality of Stigma:

The stigma of a label that is not accurate robs people of their identity and the roles that give them meaning and purpose. However, to minimize incarceration, message receivers must learn to lie and accept stigma.

The belief in inevitable decline is a lie. Even our imperfect research suggests to us that 25% of those with schizophrenia will recover on their own, 50% will take ten years to recover, and only 25% fit the stereotype of inevitable decline. Still many professionals presume message receivers are going to face inevitable decline. The idea that you can go into a hospital for a tune up and a board and care home to establish independence without facing inevitable decline stigma is naïve. Living like that is degrading and chaotic and in fact can be a lot to come back from. The goals of so many of our DSM financed institutions remain to impose upon the suffering the insight that they are ill and in need of medication, even in cases in which this is not accurate.

The pervading message is that sufferers are ill. As a result, many workers do not engage us with curiosity about our experiences with voices, visions, illusions, codes, synchronicities and extra-perceptual perceptions. These experiences may be streaming through sufferer’s lives but they must keep quiet and suppress them to earn back their freedom. Medications and drugs encourage us to suppress them and pretend they are not true. Even if we know they are true, we must pretend they don’t exist. Indeed, the realities we perceive are defined as symptoms whether they are accurate or only somewhat accurate.

Therefore, I contend that we are all facing stigma which is part of the “psychosis” process! Suffers like me need to know that this is the case. We need treatment that enable us to look at our experiences and strategize with each other.

Stigma is Irrational and Yet Pervasive in the Mental Health System:

I believe message receivers need to learn that stigma is not rational reality. This becomes hard to prove in mental health institutions where stigma is so pervasively embedded. However, message receivers who have been removed from such oppression can learn to use rationality as a tool to challenge stigma. Indeed, when we finally recognize the effects of stigma clearly, stigma becomes the spiritual trickster (see my previous article) that might come true if we believe in it. For many of our people, trust in stigma has left us to rot in poverty, inactivity and distress for so many years.

So many have determined that cognitive therapy for psychosis is the answer to this stagnation. However, teaching cognitive therapy may not help people in institutional settings like board and care homes. Most of the time message receivers may be forced to accept irrational stigma and submission in the institution. In the worst case scenario, the institution turns around and, in treatment, tells then that that irrational thoughts are part of their illness.

This is precisely why I believe that we sufferers must teach each other to acknowledge our skills and abilities yet conceal and not act on them. This serves to save us from being stigmatized. Pretending I was ill then, but now am well becomes a lifelong task for a person like me. I am a licensed therapist living life on the playing field of the oppressor—this has become my destiny. In reality I haven’t changed much other than gaining a sense of social power.

More on Using Rationality as a Tool:

It took me a long time, but I learned to conceal my anomalous experiences, and use emotional intelligence to wait and see what happens. Often, the truth becomes revealed to me at some point. Until then, I need to collect hard facts before I fully trust my message experiences even though often they prove to be correct a significant portion of the time.

In learning to survive amidst stigma, I have learned to respect people’s privacy and not expose corruption. That doesn’t mean I like and approve of corruption, but I am guarded with my suspicious version of truth until I know for sure. I have come to learn that there are many high powers that keep secrets and use them to manipulate. Secret societies are an epidemic in our nation and easy to confuse. Sometimes these powers may be good to me and sometimes, cruel.

I am only privileged with so much information. I do not know the whole truth unless I am watching Sons of Anarchy, Nine Seconds, the Wire, or Breaking Bad. Until facts are revealed to me, I will advocate for the truth to the best of my ability. That means info that I get from extrasensory I try not to act on, even when I believe it may be true. So often doing so comes back to haunt me.

At the same time, eradicating social, institutional, and self-stigma from my life means doing away with the hierarchy of corrupt and distorted facts. I do not trust information that others may believe. My goal is to help people live in their strengths and truth so that they can experience the meaning and purpose they deserve. To achieve this, I may use rationality and facts as a tool to empower people. Thus, instead of saying that the illness is caused by irrational thinking, I endorse cognitive therapy as a tool that is sometimes needed to eradicate the stigma. When presented in this manner, I argue, it becomes more palatable to the oppressed message receiver who already receives more blame for their lives than they deserve.

Acknowledging A Diversity of Stigma:

 I have learned a great deal being a Caucazoidal man working in a community that is predominantly African American. Indeed, there so often are multiple layers of stigma to face in a single institutionalization. In addition to mixing Caucasian and African American cultures there is a lot of other diversity in my workplace. In my opinion, mixing of cultures takes a little more care and effort but is an optimal place to reconstruct a culture of “psychosis” that can stand on its own two feet with stigma as part of its definition.

Participants in the program learn about oppression of many different types of cultures. Some of us may have a sense that their culture has turned on them when they send them to the institution. Others identify with the oppression of their culture’s history as a source of strength. Not only must they learn about deconstructing their own culture in a way to collaborate with others, doing so helps them understand themselves better and the trauma associated with special message crisis. Additionally, gaining cultural skills makes it easy to find common ground. I believe that “psychosis,” anomalous experiences, or what I prefer to call special messages experiences is its own culture that is dominated by stigma.

Learning to overcome multiple stigmas and greeting people where they are helps participants get a sense of their strengths. Eradicating stigma may well involve giving up privilege for me as a white male, but it is the right thing to do. It feels great and helps me accept myself for who I am and mutually grow with other people. As a therapist, I find myself constantly belittling my role to create mutuality.

I would love to say I am not guilty of racism, sexism, legalism, educationalist or stigma of any kind. But the fact is, to eradicate stigma from my life I must accept that it exists and be on the lookout for it in myself. That is part of my healing process. Judging things increases stigma.

Internalized Stigma, A Part of All “Psychosis” Related “Disorders:”

 Regardless of the stigmatized word, the public and the stigmatizing people in the institution have a way of getting into the message receiver’s head. Suddenly the message receiver starts thinking very irrationally about themselves. Distorted thoughts get expressed and must be countered with what I prefer to call anti-stigma cognitions.

When stigma gets internalized, the message receiver’s positive traits, inclinations, productivity, and the things that give them identity starts to decline. It doesn’t really matter what word gets used, what matters are willingly working with social skills and cognition to overcome stigma. Many message receivers can’t stop sensing that stigma is going on. They may effectively overcome it, but sensing it is a burden.

While currently the best practice for treating psychosis (CBT for Psychosis) involves eradicating irrational and stigmatizing thoughts, I must express my belief that it is also important to give message receivers the opportunity to map their voices or review their special message experiences with people who will not invalidate them. Telling their stories and collaborating with others who might help them change what the hearing voices networks calls “their frameworks” or what I have elsewhere termed “their causation theories” to make them more flexible in how they make meaning of these experiences.

Voices and messages may be an ongoing experience for many. Much like racism or sexism, suppressing or denying them may make them worse, while mindfully accepting them and letting them go may make them less burdensome. I believe that the more these experiences are stigmatized and suppressed, the harder it becomes to quit being impacted by them. The public, the institutions and the individual all need to learn to eradicate stigma to solve a person’s “schizophrenia.”

The post The Need to Include Experiences of Stigma in the Definition of “Psychosis:” appeared first on Redefining "Psychosis".

Finding a relationship when you struggle with mental health challenges can be hard for a host of different reasons. Depression, anxiety, addiction, and interpersonal struggles can make relationships very challenging. There is stigma attached to each of these conditions and many avoid contact and fail to see other great qualities that the sufferer brings to a relationship.  For years I struggled with relationships in ways that may sound familiar to this; however, it wasn’t until I caught a “schizophrenia” that I was able to get the emotional intelligence I needed to find and maintain a soul mate. Thank god for “schizophrenia!”

Like many of us who struggle with mental health challenges, I was starting out the game with some disadvantages. My family relations were strained. I moved away from home before I graduated high school and my room was converted to a study.

I transitioned into college when a twenty-five-year-old daughter of an alcoholic rescued me from the eating disorder unit upon which I spent a significant portion of my senior year. I started living with her in the inner-city; but was on a tight leash. I was not even able to have male friends. I survived the relationship for two years and then was in mourning. I lived alone in a roach infested inner-city apartment to hide excessive binging and purging. I did not develop standard dating skills in college.

I was lucky to use a good GPA to land a job out of college that could pay my bills. Even with a professional job, my initial efforts to date were awkward and lacked discretion. Into each date I’d burst, willing to commit for an eternity with unconditional love.

I was in constant pursuit! Even so, I managed quit binging and purging. I landed a second job and put myself through graduate school in the evenings and weekends. During that time, I had two stormy six-month relationships. Both left me because of my mood. I’d get depressed and need a lot of support. When the support wasn’t there the depression would get worse until they left. Getting dumped in this way was extremely painful.

In another sense, I was battling what had been labeled schizotypal personality disorder, depression, ADD, and Dyslexia and was forever trying to be well enough to marry a chronically normal woman and overcome these conditions. I listened to my Ph.D. therapist without discretion. I didn’t know she told my parents she didn’t think I was college material. She set my personal relationship goals for me as if she was a controlling parent. The depressions just meant it was time to change medications. And I was not to question the wisdom of the psychopharmacology professional.

Even with this mentality as guidance, “schizophrenia” did not take over my life right away. A year post graduate school, I decided to break away. I believed I could start over again and use the skills I built on the East Coast to have success. I didn’t want to be attached to the stigma of the anorexic boy that haunted the halls of my private high school persistently tormenting me the way it did. I wanted to divorce all the six degrees of separation people who whispered about me behind my back.

These hopes and dreams went swimmingly well in Seattle. I fell into a wonderful circle of support in the Quaker meeting and in the Seattle Mountaineers I learned to snowshoe and bag off-trail peaks. I was constantly active, and I built much stronger sense of support than I had on the east coast.

I immediately fell into relationships. I met a Thai Woman. It was the start of something powerful, but she was a survivor of domestic violence and I wasn’t passing her safety tests. I reacted to the confusion by finding the rat-race love of my life. Her parents paid for her graduate school and she even had money to go to the car wash. The relationship only lasted six months until she found out I took medication. Before she found out, it looked like my hopes and dreams were going to work out fine. Then depression set in.

That girlfriend left me the same time I took a risky job amid the downtown politics of the local drug war. I started to work at a section eight housing authority where I thought I could make the most of my need for social change. There were, after all, many things that mattered to me apart from relationships. Three months later I entered a temporary relationship with a woman who was politically positioned to help me blow the roof off the power-brokers house. And that’s what we did! Two months after I left town, the housing authority lost control of the project and money was raised to improve services.

However, these risks took a toll that caused “schizophrenia: to take hold. In fact, I found the relationship scary. I found I needed to experiment going off my psychiatric medication. I was learning that my intuition was a better teacher than that therapist on the east coast. My intuition might save me from getting shanked. I had thought that college in the inner-city had prepared me for this kind of reality; but, now I was invested in this lifestyle in a different way. Now, I could do something about the violence and chaos. Now, I did things like leak news stories that made violence a real possibility if the wrong person found out.

When I was personally threatened and warned not to run, I split. So, began my two-year period of “schizophrenia” during which I barely managed to stay housed and employed. Before I could make it to the Canadian border, I was accosted by police. Three days later, I got committed to a State Hospital for three months.

You see, I’d come to believe that the mafia was following me and that my family, who were relieved to have me hospitalized were part of the conspiracy. I had evidence from my interactions with people in the hospital that supported a real conspiracy. Maybe my family was safer to blame. And they didn’t seem to care about the appalling conditions to which I was subjected.

Discharged to the streets, I took a greyhound and landed a job and got an apartment until I ran out of medication.

When the medication wore off, I lost the job and found myself on a vision quest to avoid the control of the mafia. Everywhere I went I could see signs that I was getting followed. I was not able find able to find work. I filled out thousands of applications. Professional work was out of the question. Ironically, the only non-professional job I could find was arranged by an aunt at an Italian Delicatessen in the Bay Area.

After yet another move, I had to ride my bike ten miles and take BART for an hour to get to work. I would work an eight-and-a-half-hour shift and BART and bike home. It took me six months to get my mother to give me money for a car and another four months to establish enough rapport and safety at the Deli to find another job. I couldn’t foresee that the process of having “schizophrenia” in this way was going to do me any good. So, I began to develop emotional regulation skills.

The first week I was five minutes late to work and they threatened to fire me. My immediate supervisors were nineteen and had cars and homes. I was the last to go on break. Co-working kids would goof off leaving the work for me and tease me because I bought my sneakers at Walmart or didn’t have a plush new car like they did. Customers would complain that my shirt was wrinkly because I had to bike through the rainy season.

Now, this was a lot like my personal experience of junior high, but really it was the least of my worries. At the end of a long day I would find my apartment broken into, police search style. I would find my mailed work-correspondence returned and opened despite complaints I left at the post office. I found residents I knew from the section eight housing complex in Seattle turning up at the BART station on my way to work with handcuffs and handmade “CIA” signs. I would find bike thieves at my bike lock. I would regularly find things moved around in my apartment and of course there were the many other signs of being followed on my way to work and back.

At work I paid for my food as I was supposed to, even though I barely made my rent. There were many incriminating thefts for which I was not responsible. There were lies made up and threats to fire me if I ever got angry like that again. And my parents constantly repeated that if I lost my job they could not afford to help me.

Thank goodness that there were sandwiches to be made, counters to be washed, garbage to be taken out, and excellent customer service to provide! I constantly strove to improve in these areas of job performance and this forced me to control my emotions. I was living on prayers with uncertainty that this would ever end. I learned to accept abuse that I hadn’t previously imagined to be possible in America.

Ten months in, I agreed to meet with a psychiatrist. When I finally admitted to him that I thought my co-workers at the Deli were working for the CIA, he prescribed me 16 mg of Trilifon. I took half of that dose and slowly things got easier.

Two months later I got hired out of that little world of the Italian Deli, but relationships were the farthest thing from my mind. I had a no money, no honey mentality. I worked seventy-hour weeks to make ends meet to maintain financial independence from my parents who, throughout, had used my dependence to force me to see an Italian therapist I did not trust.

It took me three years to find someone to date. Money was not the only obstacle. I admit that dating someone when you have a history of “schizophrenia” is very hard. I figured if people left me for common-cold depression, that anyone hearing my story of psychosis would give me an immediate boot.

I didn’t fit in with all the other therapists I worked around because of what I’d been through. Then, because I didn’t have any time, I dated a transient roommate without a job. Because I was amazed she would give me a chance, I put up with abuse. The relationship lasted almost a year, but the break up was mutual for the first time in my life.

When I was ready to date again, I knew better than to rush into things. I had established a steady job at an outpatient psychiatric unit with weekends off. With a sense of perspective, I reflected on relevant experiences. I learned with hindsight that there were some connections, like the connection I had with the Thai woman in Seattle, that were worth persistence. I learned to listen to my heart not the social judgement of an upper-class psychotherapist. I sought simultaneous surface relationships to keep my hope going so that I wouldn’t crush on anyone. I talked to myself so as not react to rejection. Likewise, I would not instantly attach. And, most importantly, I wanted to find opportunities to bring mental health into the equation.

When I met my wife at a meet-up camping trip, I carefully heeded all my rules, but found that she was a lot like me. When we hiked together on that first day, I learned that she too struggled with learning disabilities. On the second date when she talked about having OCD, I trusted her more. Having mental health be part of the discussion was refreshing. I decided to reciprocate by sharing my struggles.

On our next contact, when she admitted she had told her therapist about my “schizophrenia,” I did not get mad. I peacefully finished her sentence.

I was right, her therapist had urged her to break up with me.

“I am not going to listen,” cried my wife.

It was true I had been scared when I started to sense those familiar sentiments, but I was confident. I had grown to believe that I could accept a possible rejection in stride. I had other options lined up. I now think this is a small example of emotional intelligence skills that are necessary for good relationships to flourish. Thirteen years later we are both graced with those emotional intelligence skills in our daily interactions.

Me, I learned those emotional intelligence skills working through my “psychosis” at the Italian Deli. I think what is important about my story! It is not that I have been successful despite my experience with “psychosis,” it is that I have been successful because of what I learned during my “schizophrenia” journey.

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I was a skinny and reluctant social worker when I first started out. I was working through an eating disorder. Initially, I didn’t really believe that taking home a middle-class salary for nickel and diming those less fortunate was my idea of contributing to the world.

I guess, I’d gotten the idea that that was what the field was like during interviews I’d held with middle-class white women who worked down the street in government agencies during a social welfare class. I’d set up residence where I was finishing up my schooling, in Camden New Jersey. I needed money to stay independent from my parents.

Then, I took a computer test that suggested that I should become a cop in the career development office. I’d worked under-the-table at a local Korean deli for several years. Most of my neighborhood friends had pointed to the vice squad when they came in under cover and took coffee from us for free and told me they were the real bad guys. Sure enough when we were held up at gunpoint, the cops were scared to come around.

“Yeah, picture me as a Po-Po,” I said to my best friend, an English major who used to sell drugs and was going back to school.

“Well, actually, you always have had a cop mentality,” said my friend.

I shot him a look that said he was insulting my intelligence. I started looking at social work internships.

***

During my second job, I worked at a day program that was connected to a 30-day crisis house. Since I was only just entering a master’s program, I felt extremely privileged. As a result, I aligned myself with my supervisor and other more experienced workers. Without credentials, I was focused on working with people who would get my back.

One day, I received a client and was ready to get to work on housing issues, when I found out that she came attached with a more experienced case manager. Though not very talkative, she did tell me very clearly that she did not want to go to a particular boarding home, the largest such facility in the county. When I talked to the case manager, he was clear about the woman’s future. She had to go to the unwanted boarding home.

“Wow, that girl is really sick!” I heard a coworker who worked the graveyard shift at the crisis house say.

“I don’t get it,” I said, “I don’t see why she can’t live where she wants to. I help other people find housing, why can’t I help her.”

“That girl is very sick, I can just tell by the way her eyes roll to the side” said my co-worker

I deferred to experience. Sure, I had been hospitalized for six months myself, but I knew better than to make waves that would impact my work reputation. My therapist was teaching me that I could be a little paranoid and I wouldn’t let that affect my clinical judgment.

The woman was shipped away to the very place she most did not want to go. I can now see that she had been right not to trust any of us. For us, she was just protocol.

***

Once I graduated my master’s program and was promoted to a case management position, I visited the infamous boarding home which was buried in the New Jersey Pine Barrens in the far reaches of the county. Out in the pines, there were few stores, lots of sand and aged pine trees whose growth was stunted by fire. The pines were where most boarding homes in the county were located. I admired the scenery as I drove out.

The home’s one-story buildings were made of quarter inch plywood and styled in rows like chicken coops. There was no insulation from the elements in any of the buildings. Corridors were long and full of small rooms with cots and no furniture. At the end of each there was an open rec room where open vats of warm, iceless bug juice sat out under the dim lighting. There were no fans to drown out the buzz of the flies. These halls reeked of sickness. The chipping linoleum floors were being mopped with cheap chemical stink water that reinforced the sick feel. Almost all the clients were either gone to a day program or had walked the three miles to the store. I could not even begin to picture what the place looked like when it was full.

When I finished I followed the owner to the front office. The owner’s daughter had been in my sister’s class at our posh private school before male anorexia had drained my bank account and lowered my social standing. Back at the office, the owner had barraged me with gossip and information about the school.

Once freed to collect my thoughts, I recall betting to myself that they treated mentally ill better back in the Middle Ages.

***

A year later, I made enough money to fund a move to the west coast. Within six months of moving, I made a job transfer into setting up services in a section eight housing authority facility.

Here, I was reminded a lot of my inner-city days in Camden. I got to know a more urban style of warehousing. The project was scrutinized by the local media in the City of Seattle with its large homeless population. To get section 8, a homeless person had to spend time in this project.

I witnessed quite a bit in the six months I worked there: thugs tearing down doors and emptying apartments in broad day light; stabbings of impoverished addicts that were barely sanctioned; a suspicious death by heroin overdose; vulnerable individuals’ going to jail for being bullied into letting their rooms be used to deal drugs. And some of the things the residents said were even more eye-opening. I figured it was finally time I do something!

When I found out my supervisor had a significant drug habit I became suspicious of her intent. I stopped heeding her. Like a vigilante, I leaked info openly to a community activist and to newspapers and was starting to face unforeseen levels of threats.

One day, a resident with a job who had pointed out the local drug kingpin to me, told me, “It’s true we all love you here, even some of the shady people like you . . .”

“It’s just that we are afraid of losing our housing,” added his partner.

“You see,” continued the resident, “we all know this guy who came to work here and was just like you, fighting for all the residents. And he ended up having to come and live down here. I am just worried that that is going to happen to you . . .”

Shortly after this interaction, I received an unsuspected threat from my best friend from my inner-city college days who I called to consult. I found myself in a unique state of crisis. Was the threat real? He paid for college by working surveillance for a “bad” lieutenant in the Philadelphia Police. I matched up stories and began to see the world from a new nefarious perspective. . .

***

Three days later, I was picked up out of a ditch on a mountain pass outside of Butte Montana.  I had been harassed by police for the past two days since they had violently halted my escape to Canada and separated me from my car. Finally, I surrendered to them.

Two months in, I was transferred to the most chronic unit. The temperature inside was below freezing. There were icicles inside the window that sat above my head. It was almost as bad as the boarding home in South Jersey.

When I first entered those dank halls, I felt destined to behave with the subservient merriment of the thirty-year residents. I was given old, dirty clothing so that I could layer up among the crowded halls. My appearance and sense of self declined. Fungus off the bathroom tiles grew under my toenails and warts covered by hands.

I still remember waiting outside the ward in the freezing Montana winter, staring at the cash cattle in the field. I’d be waiting for the staff to return via bus, late from lavishing with their lunch.

There I was determined to stay hopeful, industrious, and independent as I weathered the biting chill and it only annoyed the staff to no end. They all rolled their eyes when they returned as if to say I was entitled.

“That’s what they all say about you,” said my psychiatrist who I finally got to meet with her two and a half months in. I had put requests to meet with her in writing, but it never worked.

The staff didn’t have any hope for me. They all knew I wanted to take down the mob for what they were doing to me. The Cowboy Security Squad even gave me a beat-down to discourage me. Maybe I was a little entitled because I kept mouthing off.

Meanwhile, other patients told me the mafia really was following me. Many said they were in the mafia. One even tried to lure me to join a local gang for protection.

***

All this I went through was just the beginning of some very hard times that would last for two years.

Discharged to the streets I moved to Fresno, California and the temporary work I landed to get an apartment to let me go when I ran out of my month’s supply of medication. I started to feel I was being harassed in the streets. I didn’t know what to do. Somehow, despite extensive efforts, the only other job I could find was at an Italian Delicatessen.

Working at the Italian Deli forced me to move from the Central Valley to the outskirts of the Bay Area. Only then, was my family who I believed was connected to the mafia was willing to do what they could to support me.  I had no supporter who seemed to believe that anything that I went through was real. They only treated me as though I needed tough love.

After ten months of employment, I finally learned to stop being bullied by drug-dealing, suburban kids who were half my age. I stopped letting my white shirt wrinkle during my rainy twenty-mile bike commute (and two-hour-long BART ride) to work; I accepted that I had to be polite to the Republican clientele that wanted to know all the ridiculous details about which farm their fine fucking olives came from. Finally, when I got insurance and could afford medication, I was able to get the anger and paranoia out of my eyes.

I believed people were entering my apartment during this time. Mail from job interviews would come to me already opened in spite of my complaints to the mail service.

***

Now, I am a Licensed Marriage and Family Therapist who works in an inner-city psychiatric day program, primarily with warehoused individuals. Boy, did I find it difficult to return to my career after being warehoused? It was a real uphill battle. I even lost a per diem job at one point and nearly landed back on the streets.

And the survivor’s guilt really keeps me up some nights.

Don’t worry! I have learned my lesson about being an advocate. Additionally, I know better than to try to educate the public about the evils of stigma and mental health warehousing. Research says that this will only make the problem worse.

Sure, I feel bad that twenty years ago a woman was committed to squalor and I did nothing.  But I learned advocating for the mental health of the vulnerable needs to be done carefully, one case at a time. Alerting the press and crossing the police is a good way to lose your housing and end up destitute yourself. I learned first-hand about how arrogant my actions were when I thought it couldn’t happen to me.

In these days of escalating disparities, I am grateful now to respectfully extend my therapy skills this forgotten about population which is growing exponentially in our local homeless encampments, our flooded shelters, board and care homes, our county jails and over-crowded prisons. When I think of all I went through and still go through because I was warehoused for one month, I am amazed to see people come back and do better and better. There is a lot to know and respect about them. It is important for social workers just starting out to learn from them. They know an awful lot about their situation.

I think in this era, losing housing could happen to many of us. Try attaching schizophrenia to your name and see how many people stick around to support you and listen to your woes. Some days I come home distressed that I cannot do more to help, but over the last sixteen years I have learned how to share my story and develop programs that do help people. I am extremely lucky!

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For the past ten years I have used the words special messages to bring people together behind a better-defined notion of psychosis. I hope in this article will help better define what I mean by special messages and why I think that messages are part of a process that includes seven other components that I defined in my last article.

Many people who have worked with me presume that when I say special messages I mean voices. It’s true that the words hearing voices ring true as music to my ears. Indeed, the hearing voices movement has vastly improved the social understanding of what is happening to message receivers. Less dominant are the memes associated with all the “psycho” stigma that gets equated with the psychosis word. However, I still argue that just saying hearing voices fails to unite all people under the umbrella of the word psychosis.

I have come to feel that saying hearing voices is like saying the letter “a” instead of the word alphabet. It’s true that voices offer real and valuable experiences that society tries to suppress. But, I think that there are at least twenty-five types of experiences in addition to voices that can be relevant in creating psychosis. Put those experiences together in different ways and a person can create a vast masterpiece of meaningful reality that functions as an alternative to mainstream thought.

Not everyone who experiences psychosis uses all twenty-six types of experience, but some individuals may use far more than I can depict in this article. I believe each message receiver has a profile of messages: some that they can and cannot relate to.

I contend that no message is sicker than another. Indeed, problems associated with special messages need to be measured by the level of distress they cause, not by their existence. In fact, someone who hears voices is not necessarily sicker than someone who has more “normal” message experiences like getting an intuition or having a dream. In fact, one person may hear a voice and experience little distress, but have an interpersonal interaction that troubles them drastically. Others don’t get upset about their intuitions or interpersonal interactions, but are harassed to no-end by the fact they hear controlling voices. Sometimes it is the convergence of many different types of messages that cause the distress.

An experience becomes a special message because not everyone else has experienced it and because its meaning is not always clearly defined. Indeed, special messages take an element of speculation to thoroughly understand. Ultimately, sometime message receivers are spot on accurate about reality based on their special messages, but mistake happen.

I have found that encouraging people to tell stories about message crisis or “psychosis,” over the years helps uncover a variety of types of special messages that fit different profiles. It also helps a person feel validated, heal and connect to others. Though it can take some time, I have seen many people realize they are not alone for the first time in treatment hearing stories that others tell.

I also believe healing involves being able to pay more attention to message processes instead of just suppressing them and pretending to be a normal droid. Thus, emotions associated with special messages can be felt without burning their way permanently into a person’s life.

Many of us who suffer may have become preoccupied with real issues of war, genocide, torture, apocalyptic fatalities, spirit discernment, metaphysics, social control, truth, mind control, propaganda, good and evil and healing from these dilemmas may help us become very wise and valuable social contributors.

Additionally, people in message crisis need people who are aware of what they are going through to be with them while they are going through it. Message crisis can be an extremely alienating experience in which everyone wants to correct, rather than support the message receiver.

Although some message experiences in a person’s profile may seem normal or “real,” in crisis, they can dominate the day particularly because they fit together with others that no one would believe. The following are questions that I have developed to help the reader identify experiences that have influenced message receivers into what I believe become cultural thoughts that get defined as psychosis:

• Do other people hint at things that profoundly relate to your life as though they know everything about you as though they have been listening to wire taps or are clued in through word of mouth, or other intuitive skills?

• Do you get special intuitions based on body language or voice inflection or reading peoples’ minds that often turn out to be correct?

• Do you get uncanny premonitions from gut feelings, or intuitions that might be considered ESP?

• Can you pick up on people’s energy so that you can tell how they’re feeling when they pass by?

• Do gestures or specific behaviors of others help you to most definitely know their unconscious thoughts?

• Are things that bear symbolic meaning being left around for you to find that might be there to re-program you as if they are counter intelligence?

• Do you have odd strings of “coincidence” that link together in ways that suggest or confirm things (serendipity?)

• Do people follow you on the bus or train bear objects that identify them to you as people who are following you for better or worse?

• Are you able to instantly tell if people are either for or against you

• Are people sent to represent other people you know for a significant reason (impostors, look-a-likes, doppelgangers, agents)

• Are you profoundly affected by dreams might be prophesies or reveal truths about yourself or the universe?

• Do you experience de ja vu occurrences during which something happens that feels like it is happening to you again for the second time?

• Do you find yourself reviewing vivid memories, sentences or words for hidden meanings?

• Do people use codes to communicate secret info like numbers or words; do you break words into syllables and look for punny linguistic coincidences?

• Do people have clear telepathic communication with you intentionally

• Do movies, songs or shows on the radio or TV come to take on new meanings when you read between the lines. Might they even be special broadcasts that only you get?

• Does certain forms Media contain secret coded truths that only you can understand?

• Are you touched by the truth when you read in between the lines of certain situations?

• Does it seem like people are putting on skits around you to teach you a lesson?

• Is history full of conspiracies that god reveals the truth to you about because of discernment of spirit?

• Are people slipping things in your food that are taking over your bodily processes?

• Do you have bizarre visual experiences that make you think you are in a different dimension or on a different planet?

• Do you see ghosts or entities that communicate with you in ways that other people may or may not be clued into?

• Do you hear your own thoughts as distinguishable words that give personal insights into your being?

• Do you hear people you know talking to you as though you are engaging in in telepathy?

• Do your voices become familiar characters to you that you keep track of and take on personalities that you name and react to?

• Do you get physically tortured through tactile pain or sensations that function in conjunction with your voices?

• Have you ever been taught about the “I” word—illusions—which are sounds, visual experiences, sensations, smells or tastes that mix with reality, that really are there but that may become distorted to give you uncommon experiences?

• Do people make uncanny comments about your private thoughts or experience when you pass by them talking in the community.

• Has a character on the TV starts talking directly at you referencing you by name?

• Has the hiss of a steam heater started turning into voices?

• Have clouds in the sky turn into visual shapes?

• Have you experienced things that are so strange it seems impossible that beliefs you hold are not true?

• Do you have an uncanny awareness of or evidence of who you were in a past life?

• Do you see projected images that show you secret images or entertaining stories that give you secrets about your ancestry or aliens or the mysteries of the universe?

• Can you communicate with spirits, aliens or ghosts?

• Do you sense when reincarnated spirits, aliens, or robot-machines have entered modern bodies as clones by looking at a person’s glistening eyeballs?

The post Why I Say Special Messages Instead of Psychosis appeared first on Redefining "Psychosis".

Psychosis is an antiquated word that leads to huge misunderstandings that play a large role oppressing a larger and larger portion of the population. For the past nine years I have run professional focus groups, going through the process of listening, exploring, reflecting, writing, seeking feedback and rewriting to get a better definition of psychosis.

Defining Psychosis, the Mainstream Way:

I remember using the mainstream definition as a young professional during the job I used to get me through my Master’s Program. Wondering how I was to connect with people who had delusions and voices that I clearly didn’t experience with my neurotic, highly-medicated self, I filled the white board with a list of labels and complicated words I was proud to be able to define. It was my college education that got me the job, and this was one way I could use it to be useful.

positive symptoms

Hallucinations:           reports of sounds (voices,) visuals, tactile sensations, tastes, and olfactory sensations that others do not experience

Delusions:                   “an idiosyncratic belief or impression that is firmly maintained despite being contradicted by what is generally accepted as reality or rational . . .” In spite of the “preponderance of the evidence”

Disorganized Speech: Frequent derailment or incoherence): Word salad, tangential, or circumspect speech

negative symptoms

1. Andhedonia
2. Avolition
3. Amotivation
4. Alogia
5. Attention Problems
6. Catatonia
7. Posturing
8. Lethargy
9. Flat affect
10. Social Withdrawal
11. Sexual Problems

The Errors of These Ways:

Life has taught me that the mainstream definition, as such, does little to depict what it feels like to have a break from reality. Indeed, not understanding this can cause a supporter to make things worse even when they have the best of intentions. Indeed, miscommunication, pain, and strained relationships often result once a sufferer has a break.

I now contend that this mainstream definition offers little helpful direction toward the healing that can be inevitable when a person accepts their situation, moves through it, and is not subjugated to the gross negligence of institutionalization.

I still remember some of the ridiculous conclusions I drew as a young clinician: for hallucinations, the answer was simple: ignore them; for delusions: I would recommend that the sufferer just think like everyone else does; and for disorganized speech the answer likewise seemed simple: do not speak, otherwise people will think something is wrong with you. I likely went so far as to make these assertions.

Cultural Delusions:

With what I know now, I don’t even believe that psychotic delusions exist. Sure errors, happen, but they do little to define the experience. Indeed, according to my current definition, the concept that delusions are wrong “in spite of a preponderance of the evidence” is a huge misrepresentation of what is happening.

For example, for years I heard fellow sufferers suggest that there are cameras in all televisions through which the government can spy on people. While I expressed as genuine an open mind to this idea as I could muster, I really didn’t think so. Then, the Wiki Leaks story broke, and I found out that the “delusional” people I work with were right after all. Once again, mainstream, Eurocentric ideas suggested that the world was flat.

Indeed, when the problem is defined as observable behavior, it fails to acknowledge the intrinsic value of the experiences to people who have them. It also fails to account for so much of what people go through when they are in the thick of it. So many anomalous perceptions turn out to be accurate.

I recall only one client who was brave enough to stand up to my degree and tell me that she felt she had a gift and that her experiences were valuable. I listened, but if I had truly accepted her help, it would have saved me years of torment.

What Happened to Me:

It wasn’t until I was thirty that I went through a psychotic break from reality or what I prefer to define as a message crisis. I was working amidst drug war politics and taking huge risks to promote safety for vulnerable and traumatized people. My boss threatened to fire me for associating with renegade activists. In fact, residents were dealing with violence and conspiracies in a large section 8 complex that was widely reported on in the paper.

For two years after my lengthily incarceration in a State Hospital, I moved around and was unable to find employment. I knew I could still work even though I was being followed. The only thing I had learned in the hospital was how to endure abuse and be prepared for utter squalor.

My best explanation for what had happened to me was that the mafia was following me. In fact, I had developed the idea that it was my own family who was responsible for the constant threats I was experiencing. Finally, I decided to trust my aunt, who was the black sheep of my father’s side of the family. She was able to attain a job for me making sandwiches at an Italian Deli.

Underemployed and harassed in the most controlling of ways for ten months, it would be a decade later when I would learn that that famous celebrity-chef I met and at one point surmised to be the local kingpin really was the kingpin just as I had suspected. It’s true that throughout my tenure at the deli, I surmised many people to be the kingpin, but still . . . When I returned to taking medications, I finally was able to get a social services job away from the deli. Eventually, I returned to work in mental health.

My Learning Process:

Nine years ago, I grew tired of running standard groups. In many cases, everyone in the group had experiences with psychosis, yet we all sat suppressing those experiences and were communicating in the language of the oppressor. I had heard about Hearing Voices Network groups in Europe, and I decided to create a specialty group in which I used my lived experience to further explore the experiences that people go through during psychosis.

Since that time, I have been deconstructing the concept of schizophrenia and reconstructing a definition for psychosis into eight components that might better reflect what people go through. I feel that the following eight components give the reader, supporters, and even provider-folks a better definition of what people who experience psychosis go through.

Psychosis Redefined in Eight Components:

1. Special Messages:

These are a collection of triggering experiences that give usspecial information that others may not be aware of.

• Uncanny intuitions,
• Hearing voices,
• ESP,
• Sensing the thoughts of another,
• Premonitions,
• Visions,
• Dreams,
• Tactile torture,
• Interpersonal feedback,
• Reading between the lines in media (TV, Movies, Newspapers,)
• Seeing clues in words,
• Seeing clues in numbers,
• Seeing clues in the world that surround you.

2. Divergent Views:            

Streams of thought about the way the world works that arise from special messages. These are thoughts that explain how the messages are possible. Often, only speculations, many divergent views we make aren’t wrong; in fact, many may be more correct than mainstream ideas (sometimes only in a sense though,) but most people will tell us they are wrong.

3. Sleuthing:

A state of mind in which we are straining to find the truth about special messages. This works with our powerful affect state and may seem like a way of surviving or exploring. Once we develop a divergent view we sleuth hard for more special message evidence to confirm correctness (a rational process.) As Special Messages build up we sleuth, and more divergent views get formed.

4. Theory:

A hypothesis or educated guess as to the ultimate cause of the message. Just when the message is received, the pre-conscious theory explains why the message happened, who sent it.  The theory is integral to our understanding of what the message means. Often the theory gets stuck on one causation modality (in sum I have developed five potential modalities that serve dozens and dozens of theories) and this drives us to sleuth intensely and make errors.

5. Tricksters:

Tricksters are potentially false, negative divergent views that we receive in the process of making meaning of special messages. Recall that, in fact, special messages lead to both accurate and inaccurate divergent views. In crisis, tricksters may really be false, but if we believe in them strongly enough, they work with a negative self-fulfilling prophesy to come true. Thus, we think we are followed and we end up in the hospital where we really are followed. We think we are in danger, put out fearful energy, and people are more likely to be antagonistic and try to harm us. When tricksters come true it convinces us that we are right to fervently believe in the truth of all our messages and not entertain mainstream views.

6. Retaliation Reactions:

Behaviors that exude strong emotional reaction to the whole divergent process:

• Glaring with angry or happy eyes
• Looking behind you for the possibility of tails
• Making gestures of prayer
• Talking with voices in public
• Coding our language as if we are talking to CIA agents.
• Talking in codes so that the people broadcasting our life on TV won’t be able to understand what we mean.
• Getting angry or entralled and treating someone in a way you wouldn’t otherwise.
• Walking backwards down the highway to make a statement.
• Barking at a passing bicycle because you are angry like a dog (which is god spelled backwards)

7. Social Sanctions:

These are punishments like: involuntary hospitalization, seclusion, restraint, incarceration, loss of housing, loss of employment, loss of social role, social rejection, public ridicule, loss of family financial support, anger and resentment, loss of respect and validation.

8. Stigma:

• In short, stigma is a real process that leads others to label us according to our reaction behavior.
• Stigma labels carries with them stereotypical assumptions that lead to social sanctions (external and internal,) and, ultimately, to real discrimination.
• Stigma often causes us, the recipients, to get defined as our illness. We may lose a sense of our outside strengths and interests and our sense of identity.

In Conclusion:

In effect, these eight definitions function as a road-map to the rabbit-hole of psychosis which can help those dealing with distress to find things like meaningful work, relationships, and social integration. With psychosis defined as such, there are numerous solution strategies I have been able to develop that can help move people out of crisis.

Indeed, I believe a new definition like the one I have sketched out is necessary for the public to internalize. I feel if the public had a better understanding and respect for what so many people with mental health challenges experience, not only those who carry the diagnosis of schizophrenia would benefit.

Indeed, such a definition places far less blame and belief in eugenics and brain damage. In fact, often brain damage may happen because of trauma we experience being invalidated and talked down to, dis-empowered and neglected. And still even the greatest traumas give us potential for glorious learning.

Indeed, special message experiences like intuitions, dreams, and interpersonal interactions are things that everyone can relate to and can benefit from navigating in meaningful manners.

The post A New Definition of Psychosis appeared first on Redefining "Psychosis".

In the United States, when a person has what is often referred to as a first break, the courses of action that get taken against them may end up being a crime against their humanity.

While there can be very diverse responses from family and friends, there is the unfortunate tendency to turn to the mental health industry for support and direction. Many providers in the industry only know the standard of care which is to refer the person to a hospital and psychiatric medications.

Few providers take an interest in understanding and exploring the important experiences that lead to the break. I call these experiences special messages. Finding a provider who is curious about these experiences, skilled at understanding them, and who knows better than to try to suppress them can be rare.

Many providers fail to acknowledge the trauma involved in the lives of the people who have first breaks and that the trauma that gets worsened as the standard of care—forced medication, social security, revolving hospital doors, and warehousing—get implemented. Many presume this is a necessary process.

In fact, I know just a few providers who would not take the contention of this essay seriously: that to recover, what people really need to get their feet back on the ground and have the responsibility and roles that can most certainly include that of caring for others.

Sure, when people have a break, there is behavior that can become scary and hard to tolerate. It may be the last thing that supporters think is that this person needs more responsibility. But it is a human need that is so absent in the industry that it needs to be part of the equation. In my mind, the sooner generativity needs are addressed, the sooner the recovery.

***

For many supporters who do stick around, there is an amplification of shock and distress when they find that hospitalization and psychiatric medications are not even possible until there is danger or grave disability. Sometimes the thought is that nothing that can be done until the standard of care is implemented. It is enough to push many to desperately pray for hospitalizations and psychiatric medication and curse the human rights of their loved one. Some may set trajectories for permanent warehousing and poverty.

Other supporters may encourage and advocate for behavioral change without understanding the obstacles that are faced, the experiences I call special messages. Perhaps some supporters think the afflicted person can be backed into that corner where they are forced to accept consensus reality, take their medication, and return to the person that everybody wants them to be. It can become a self-defeating, tough love mentality for many. I consider this mentality to be one that profoundly misunderstands what it takes to build trust with someone who is in a break.

***

I don’t intend to overlook the recent proliferation of early prevention programs which is a very good idea. Such programs are just starting to be created extolling the merits of CBT for “Psychosis.” Herein, therapists just entering the field are taught a best practice that wasn’t even created for the culture of the people it tries to serve. While I would not argue that this is worse than hospitalization and psychiatric medications, I still feel there is cultural bias in it. It may save some who are skilled and supported, but for many, it does little to meet the person where they are at and meet their needs for generativity.

I personally believe that CBT for “Psychosis” offers one valid technique that can be supportive when there is so much more that is needed for a good recovery. For me personally, recognizing that my thoughts are irrationally diminishing me due to the stigmatizing ways others treat me does help; but this did little to get me through until I had escaped poverty.

For me, poverty was such an irrational experience. I needed to learn to accept it before I could overcome it. Indeed, so many like me lose everything when they have a first break. Still others are forced into such circumstances with what may be misguided tough love. Imagine being told to think rationally by the same people who are suppressing you. It can be a difficult pill to swallow.

***

Seventeen years after my own two- year break I tend not to get to work with people until they are in the upper part of middle age and have utterly given up. Finally, they accept that the twisted system that has guided them into permanent warehousing can offer them support. And so, we provide transportation and provide them a place to heal. In this crazy world, we save the government money by ending the revolving door of the hospital while charging top dollar.

That is not to say that many have not done a good job surviving on their own with the occasional hospitalization. Many clients I work with are just now getting services for aging as they are falling into low-income housing. It simply is not fair to categorize a program such as ours in simplistic manners.

I believe we have some of the nicest and most beautiful people one could ever experience and what we do for them is skillfully encourage them to build a community or family in which they can support each other. Once I learned the ropes, which took quite a few years, I learned to consider participants to be unpaid volunteers and to be regaining an important role—the ability care for others after terrifically traumatic experiences. Teaching people who have breaks from reality to care for each other may take some time, but doing so changes downward trajectories.

Much of what I am saying about generativity comes from observing people in the program where I work, so many of whom are in permanent warehousing circumstances.

***

Indeed, when I reflect on what is needed for people who have breaks from reality, I think that what they need most is to maintain the role of being responsible to care for other people or beings. What happens to most people who have breaks and face psychiatric warehousing, is that they lose everything they have and get treated as though they are a drain that others must take care of.

Thus, initiating processes of caring for others and responsibility are novel experiences that can help motivate them get their feet on the ground. I at least would propose that it be a consideration in planning any person’s future who has a first break.

The post The Need to Plan for Your Loved Ones Recovery (Part One) appeared first on Redefining "Psychosis".