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Why We Need Providers Who Specialize in Psychosis

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This story is for the mental health providers or peer counselors who are invested in developing treatment programs for people who have experienced psychosis across diagnostic categories. I want to help other interested parties develop their own practice so that an important need gets addressed.

I was hired straight out of college to work in the counseling field. I started to work with an adult mental health population at my second job at the age of 23. Since that time, I have been increasingly focused on how to make therapeutic engagement meaningful when working with people experiencing psychosis. In the field, I’ve known many people who have said or implied that this is not possible. They may argue that the current mental health system is the best we can do.

I believe uniquely talented specialists who have lived experience with psychosis are needed, primarily because the mental health system fails so many people. We need outreach specialists who can meet those struggling wherever they are at; to encourage them to seek out therapy specialists, competent in group and individual practices. The more people with lived experience the better! Ultimately, I think we need a system of self-support for longterm sustainability outside the system.

Working my way through graduate school, I can still remember struggling to get my footing as a professional counselor.

“Oh, you’re good,” said a homeless man who sticks out in my memory.

“What do you mean?” I asked, perplexed by how he could affirm me with such confidence.

“Well, I can tell because you just asked me what was going on with my schizophrenia, like you really wanted to understand it.”

I did a double take at this man standing before me. I couldn’t understand how this homeless man could give such a supportive response to the privileged, nervous person standing in front of him. I didn’t sense that he was doing this to butter me up. In fact, he was far more supportive than any of my friends.

I recall making an internal commitment to him on that day, hence my desire to learn about and help treat schizophrenia. I felt I owed that man something for his kindness.

I got my degree and was promoted to a case management position. This was a wonderful opportunity to get a picture of what life was like for the schizophrenic clients living on the streets, in the boarding homes or away from the clinic. It was not a pretty picture, but I reasoned that now I could provide a service to earn their rapport. Then I could use my little theoretically-informed counseling skills to get at their truth. In many ways, I did not actually know what to say other than, “Did you take your medication?” However, I tried and I was happy with the arrangement.

After getting tired of being in my hometown and getting dumped in all the female relationships that I barely managed to make, I switched coasts and accepted underemployment in a new city where I could pick up where I left off at attempting to understand schizophrenia. I really wasn’t expected to do therapy here — I monitored well-tended housing for clusters of adults struggling with mental illness — but I did anyway, much to the chagrin of my supervisor, who I often challenged about standard care.

It seemed true that the clients seemed to have it pretty good in the west coast city. The facilities I monitored were much nicer than the ones back east. But within six months, after another heartache, I took a promotion in a pilot program setting up services in a section eight housing authority complex.

I have to admit, as a kid who grew up in a private school, the streets and “the ghetto,” much like schizophrenia, had always been a lure for me to wrap my head around. I set up shop in a notorious section eight housing project and got some real exposure to what people who end up homeless due to schizophrenia have to deal with. Let me tell you, it wasn’t a very safe environment.

Six months in, I was talking with a resident I trusted very dearly. He paused for a minute and said, “You know, one time we had a person like you work for us before, someone who really cared and fought for the residents. That person ended up losing his job and having to come and live with the residents. I just don’t want that to happen to you.”

I looked at this resident who struggled with schizophrenia and worked a minimum wage job. It was true that since I had leaked stories to the media about some of the suspicious violence and fear that the residents were subjected to, I had been picking up on random threats and feeling very unsafe. Within a week, things escalated in my personal life. I series of unfortunate events ended in my being cast into poverty and spending time in the most chronic ward where the overcrowded conditions were comparable to the worst of what I’d ever seen.

I spent two years after that trying to overcome homelessness and underemployment in a full-blown psychotic episode. When I returned to taking medication, I was able to climb out of this pit.

To get back into the mental health field, I had to put my barely attained stability on the line. I was working a new career with developmentally disabled individuals, working 70 hour weeks (part-time at a deli), but was at least financially independent. The ideal mental health job finally came up, but I had to take a considerable risk.

When I failed to attain full-time status after falling short of impressing my supervisor, I could not collect unemployment and had to do something fast. Luckily, I landed a low-paid internship, a part-time gig back at the deli and most importantly, a part-time job at a hospital with a future in it.

What I had learned about schizophrenia at that point was that most people had absolutely no interest in it. As a mental health patient, I felt like no one was interested in my story or what I had to say. The five word phrase I had been trained to use, “Tell me more about that,” was replaced with a famous five word question: “Did you take your medication?” Nobody believed a word I said no matter how real I was being. And no longer did anyone care what I was subjected to.

How was I going to transition from being treated poorly to being a fully entitled therapist?  Finally, I could understand why someone who was even a little bit interested in what it meant to be a schizophrenic was a good worker. 

To be honest, I knew I was not a good worker for a little while. I was just barely making it, overworked, highly insecure and protecting myself. When I earned my way back to working with people individually, I was a little better at getting rapport and experimenting with helping out ways to reach people struggling with schizophrenia. I heard a lot of “oh, you’re good” comments. It took me six years and a number of side jobs to get my license and be fully grounded in a staff position.

Then it was time to take another risk.

Throughout the training for my license, I had not disclosed to anyone what I had been through. Always too busy to make friends, most colleagues tended to think I was younger than my stated age and perhaps a little overly anxious about making rent.

I soon found that among licensed marriage and family therapists that most presumed there was not much value in treating individuals who had schizophrenia. Many who had been forced into working with those struggling with schizophrenia characterized them as just “lazy” and “unresponsive to instructions.” Those who picked up on my insecurity said that “maybe there was a future for me in providing just case management services.” I often heard other professionals saying that it was debatable whether or not there was effective treatment for psychosis and schizophrenia. Sitting in licensure lectures, we were taught that when you come across a person who is experiencing “psychosis,” the standard method of care is to hospitalize and refer to programs.

When I passed the licensure tests in spite of my learning disabilities, I was tired of leading groups full of “good” people who had experienced “psychosis,” and not talking about what was really going on. I decided to get to work creating my own treatment strategies for schizophrenia. I had heard about the Hearing Voices Network movement in Europe and decided to create a curriculum that deconstructed psychosis and emphasized recovery skills. I took WRAP training and started to experiment using my own story.

Learning how to navigate the profession as an identified schizophrenic has been full of challenges. A coworker found a copy of my curriculum and turned it over to the manager with grave concerns. Another left insulting cartoons on my desk. I once heard myself being referred to as, “crazy Tim!” I ignored this comment and persisted. Eventually, I took a job where I was identified for two years, advocating for change in the county. My name and condition spread like wildfire. In team meetings, I was accused of being against medications. One person who defended me ended up getting written up and eventually fired.

My groups, my popularity among people who I help and my own little paranoid vigilance has helped me survive. The past nine years have helped to thoroughly develop my own eclectic theoretical approach toward helping others who I deem to be “message receivers” in groups and individual settings.

Things have gotten a lot less hostile for me at work. I now know what I should have done to help out that homeless man I met two decades ago. Additionally, I wrote a grant and proved that “message receivers” could be paid as outreach workers to tell their story to providers and transition to being group leaders and mental health professionals while they attract and motivate individuals who might not have otherwise been motivated. I serve on the board of the local Hearing Voices Network, who I believe repeatedly proves that this work can be done on a regular basis. Perhaps one day other interested parties can get to where I am at without having to face quite as much pain. Having providers who specialize in psychosis is sorely needed.

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 Thinkstock image via halfpoint

Originally published: October 27, 2017
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