Letting the Public Know I Suffer from Schizophrenia

When people seek mental health services from me, I routinely break what was once a cardinal sin to me early on in my recovery; I review my diagnostic history. I do this with love in my heart to help inspire recovery, however, in the process, the “s” word, “schizophrenia,” will bubble up.

I do this habitually in the outpatient program I work in. I have done this by redefining the medical model definition of the word so that it more accurately reflects the shared internal process that we with “schizophrenia,” or “schizoaffective,” or “bipolar,” or “depression,” or hosts of other diagnoses experience.

As a professional with over twenty years of experience, a diagnosis tells me more about the doctor or therapist who diagnosed the person than it does the identified patient. Many clinicians will judge the mad person based on their counter-transference: their take on the color of their skin, their sex, the socioeconomic experiences in their story, their particular take on social Darwinism, or their subject’s level of trust or emotional openness.  “Schizophrenia” will result when the subject is not liked, is judged as hopeless, or by a clinician who is not accustomed to hearing harsh stories. Depression is more likely when the clinician has been snowed, has failed to really access the details of the dilemmas, or is a righteous advocate trying to undermine stigma.

For example, I recently found out based on my inability to get into a particular health insurance plan, that my current doctor has diagnosed me as a schizophrenic. My last doctor, said I was a bipolar. “So you’re bipolar, what’s the big deal about that!” He said when I described my redefinition work to him. And then there was younger-than-me doctor I saw before that, who clearly tried to be a good parent to me. He said I was a schizoaffective. One might imagine that I changed a lot, but I can assure the reader that with every psychiatrist case I deal with, I do not change my behavior or the details I share. I am cordial and accepting of the fact professionals are going to insist on seeing me until they have enough money or trust to know that I don’t need to be bothered with them.

In the program where I work, I entitle the specialty group I have developed special messages. I like to think that we have developed into a little counterculture. In group, participants are encouraged to share experiences associated with “psychosis.” Some will come to just listen. Others will talk when they are suffering without caring about what others think. Many become compelled to join the majority and talk. Still others will demure and filter into the group when they develop strong enough relationships on the unit so as not to face stigma. They may want to reflect on their growth or end their silence. Many share things with their peers they won’t share with their doctors.

I have created jargon to define seven other common experiences (in addition to special messages) that message receivers can relate to. I call this gooney-goo-goo jargon. Often, people who get helped by my groups come up to me and we have goofy fun with gooney-goo-goo talk, usually making nano nano signs. When we crack enough jokes, having enough fun to help each other feel cool and accepted, I like to think it makes onlookers more curious and willing to explore special messages. Many do.

It’s true that I have struggled some over the years with some of my clinician peers who have had issues with me being out as a schizophrenic. I think this is because historically, people presume that the role of the therapist is a competent model who can guide the client towards more mainstream success. For many the presence of special messages is an indicator that something is unhealthy.

However, among group participants, I have found that demonstrating that one can be mindful of special message processes without experiencing crisis offers hope. I have also found that crossing over and using peer techniques humanizes the process of therapy. This can be very welcome by a people who feel condemned to therapy as their sole purpose in life.

Clearly it is arguable that disclosing that you have schizophrenia has grave social consequences. Research on stigma conducted by Patrick Corrigan suggests that trying to eradicate stigma through education and through protest both lead to higher levels of stigma in the public. In contrast, this research suggests that first establishing contact with the local public and proving that you can fit in is necessary before you come out of the closet with your disability. Thus, contact is an effective means of eradicating stigma.

When I think of my professional experience I can see that when I have grounded myself in a therapeutic community for five years and demonstrated that I could out-work many and temper my emotions sufficiently, I have been able to eradicate stigma on the unit with support of the people who I help. When I left the small world of this community and assumed the role of an identified schizophrenic, schools of piranhas openly assaulted my reputation. I found myself widely targeted and irrationally scrutinized.

As a result, I believe that I have developed that unwarranted reputation because I am out as a schizophrenic in the county. I may be delusional, but they seem to disempower me frequently. They say I function without a strong peer support system; they say my college wasn’t good enough; they say I don’t utilize psychiatric emergency service enough. I have discerned this through both human interaction and intuition. The piranhas seem to say so much. But still, I am good at what I do.

With my new definition of what it means to be in “psychosis,” (or message crisis,) I have created and documented some very effective treatment strategies. I have had success connecting with people who have been silenced and institutionalized for years. I have learned to be my authentic neuro-divergent self and communicate about special messages in the room. With people who prefer individual contact, I have had to spend months being interviewed to prove that I truly have experienced message crisis. Some have needed to do this before enough safety was established to help transition them to talk about what is really going on with them.

Many message receivers live in constant states of immediate trauma. They are not willing or able to talk about the process of what is going on with them because doing so can get them punished in a psychiatric instituion. As a result they fail to get that perspective on what has happened to them to make that shift to a less traumatized state. Often, I have observed that groups with other people randomly telling stories are extremely helpful towards inspiring individuals to make that shift in awareness.

I yearn to share what I have learned in our de-stigmatized therapeutic community. Over the past few years, I have received an occasional speaking opportunity and am trying to hone those skills.  Now as I am marketing an award-winning memoir about my journey with “schizophrenia” and trying to prepare for service cuts that are likely in the current political climate, I am exploring opening a small private practice. But, I repeatedly run into that barrier of trying to sell myself as a schizophrenic. I struggle in contexts in which people are not warm toward me.

Already, I have been excluded from joining the county’s provider list once. This is a huge barrier towards being able to help the niche I specialize in.

Since that time, I wrote a grant program that sought to explore whether four individuals with a history of message crisis could learn to talk about their experiences as they develop into careers as mental health workers. The program was led by someone (not me) who had established themselves as a mental health professional in spite of having special message experiences. During the course of the grant several worked through housing crisis’s and struggled to improve their lives as they de-stigmatized the local community and started up groups in local clinics and hospitals. The grant was very successful and participants were able to use the training and support to improve their lives. Three of these pioneers now work in mental health full-time. They have helped prove to others that it could be done and give me hope that I can continue to survive telling those who accept services from me about my history with special messages.

However, in spite of all this work, I have only received more indications that my reputation has been further smeared. They say I protest against evidence based practice too much. They say my work doesn’t fit into the trendy early prevention focus that currently dominates treatment. They say I am rude for trying to push for services for those on the streets and institutions.

So with my recent application to join the county’s provider list lying in wait for potential rejection, I found myself leafing through my mail earlier this week. I received a copy of California Association of Marriage and Family Therapists Annual Conference brochure. In scanning this professional advocacy group’s workshops, I noted there continues to be no workshops that teach clinician’s about how to work with people in special message crisis.

So here I lie in wait to see if a person who has established a new therapy really can be permitted to do a private practice with the “s” word on the loose.

Will that CAMFT Annual Conference one day be able to diversify to include message receivers as people who also need therapeutic support? Will public insurance continue to fund treatment for message receivers at all? What will be the plans for those invisible people fall into the streets or into institutions?

If you heard that I have “schizophrenia,” would you seek out services from me?