The Need to Include Experiences of Stigma in the Definition of “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, educationalism 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.”

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4 thoughts on “The Need to Include Experiences of Stigma in the Definition of “Psychosis:”

  1. I just want to say how much I enjoy reading your posts, Tim. Your clear thinking always makes for such insightful reading.

  2. Hello again, Tim, Thank you for your reply. I’m UK based and facilitate peer support groups here for people who’ve been through the ‘system,’ as a volunteer working within an organisation seeking to raise awareness among professionals. And also offer support and validation to those struggling to make sense of the situation they find themselves in. I’ve also worked in homelessness, mental health, advocacy and addiction services and always interested to hear about the situation for people in your part of the world, (and other locations) and if I may, to share what is happening here. I sense there’s a general move towards change right across the globe.

    1. That is great to hear! Change is very needed. Thank you for reaching out and supporting me. It helps me try to make things happen around here.

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