As a child, I believed that any part of my body that wasn’t under the bed covers would be grabbed and chopped off by the creature that hid under my bed. At times I even caught glimpses of its shadow. I felt the air move when it passed. Several times my mother came in, turned on the light, and made me look under the bed to see that nothing was there. Rather than interpreting this to mean that my fears had no real cause, I “discovered” another characteristic of the monster. It could become transparent when exposed to light. As a result, the hall light remained on at night throughout my early childhood. If this had happened when I was thirty, I might have been called psychotic.
Every individual we meet experiences the world in unique and deeply personal ways. For most of us, a balance of reason, emotion, environment and past events leads us to interpret our experiences in ways which are generally understandable to those around us. When our experience deviates too far from the norm, we can be called psychotic.
The general population uses the term “psycho” and 60% of them believe violent behavior is an actual symptom of psychotic disorders. (Ironically, individuals with psychotic disorders are 10 times more likely to be victims of violence and most are non-violent and prefer to withdraw from society). I’d like to specifically discuss schizophrenia as this is arguably one of the most stigmatized of all mental illnesses.
Several recent studies have looked at the attitudes of mental health professionals toward individuals with schizophrenia. As a whole, the consensus has been that mental health professionals show the same level of stigmatization as the general public. In fact, psychiatrists and inpatient mental health professionals hold greater levels of stigma than the general public. Like everyone else, we prefer to socially distance ourselves from individuals with schizophrenic disorders. We endorse lifelong medication. We believe that their behavior is unpredictable and its biological basis means that the individual cannot truly control its expression. We believe “those poor people” can’t handle more than menial work and structured social interactions. They can’t survive on their own. They need the mental health system to take care of them. And, oh yeah, heaven forbid they ever marry and have children!!!
Is it any wonder that many individuals diagnosed with schizophrenia drop out of treatment? Reactive disengagement occurs across the board. We professionals offer no hope. We discourage dreams and may even label some of their dreams “grandiose delusions.” We convey the belief that their brain is broken and that the problem will continue to get worse. Medication is their only hope.
Actual one-on-one counseling almost never occurs in the community mental health system (which is where most of these individuals end up). They are medicated and dumped into lifelong partial or day programs where they attend groups on social skills and hygiene. Once they are in the system, their voice is no longer heard. We only interact with these folks to determine if their symptoms are getting better or worse. Of course “better” usually means that they are less disturbing to our sense of appropriateness. (I’d love to have a nickel for every time the word “inappropriate” is used by mental health workers).
I have no doubt that by now my passion has shown through. Folks who experience non-reality based thoughts and experiences are some of my favorite with whom to work. When I began working in settings with delusional individuals, I was told not to discuss their beliefs with them as it would only strengthen their delusions. Over time I have come to believe that this kind categorical dismissal of something so fundamental to the person’s experience creates more distrust and frustration toward treatment professionals.
Imagine that you were admitted to the hospital for suicidal thoughts related to your belief that your spouse was having an affair. Now imagine that every time you tried to talk about your fears you were either ignored or made to feel that you were crazy. You’d likely feel angry, resentful, isolated and just want to get out of there. I doubt that you would feel motivated to talk, take meds or do anything the unhearing professionals suggested. Understanding the sense of distrust that can develop over years of this kind of treatment is the first step to building a relationship with these folks.
Working with individuals with psychosis brings to my mind the story of the little prince and the fox (I suggest reading the story with these clients in your mind). The fox wants the little prince to tame him but is afraid of the boy because of his experiences with humans. The fox explains that to tame means “to create ties.” In the story he states:
To me you are still only a small boy, just like a hundred thousand other small boys. And I have no need of you. And you in turn have no need of me. To you, I’m a fox like a hundred thousand other foxes. But if you tame me, then we shall need each other. To me, you shall be unique in all the world. To you, I shall be unique in the world.
In the story, the boy spends a long time slowly earning the fox’s trust and proving that he is not like other men.
When I first meet individuals with delusions or hallucinations, I begin by introducing myself in the same manner I would introduce myself to someone who walked into my office. I approach without fear or posturing, using my first name, and often call the person sir or ma’am followed by a request to know what he or she would like to be called. [I say “without fear or posturing” because it’s not uncommon for direct care staff to interact as if the person were either an imminent threat or a child]. This expression of genuineness and equality often results in a sudden, momentary change in behavior. Being treated with respect seems to draw the person back to a level of social connectedness and awareness. For some, it has been a long time since they were treated like a “normal” person.
As with any other client, I spend a great deal of time listening with an ear for understanding the person’s world. I reflect feelings. I paraphrase ideas. I remain non-judgmental. I avoid telling the person that they are wrong. Yet I always remain honest and, when appropriate, humbly share that I don’t understand or that I don’t see things the same way (“can we agree to disagree”). I think of it as a “batter’s stance” where my legs are straddled between worlds but my weight is firmly placed on the back foot.
I strongly encourage counselors who work with folks who experience delusions or hallucinations to read the following books:
“Cognitive Behavioral Therapy with Delusions and Hallucinations: A practice manual” by Hazel T. Nelson
“Cognitive Therapy of Schizophrenia” by David G. Kingdon & Douglas Turkington
“Cognitive Therapy for Delusions, Voices and Paranoia” by Paul Chadwick, M.J. Birchwood & Peter Trower
In addition, look up Pat Deegan PhD and Daniel Fisher MD. Both of these practitioners were diagnosed with schizophrenia in early adulthood and went on to have successful careers as mental health practitioners. Dr. Fisher didn’t “come out” until he had worked for many years as a practicing psychiatrist. Dr. Deegan’s “Coke and Smoke” video is fabulous for destroying the myth that people with schizophrenia are unmotivated to care for themselves.
We need to reengage with the marginalized, unheard multitude. In many cases it has been we, the mental health professionals, who have driven these folks underground. I hear stories of such dehumanizing treatment that I become deeply ashamed of my profession. When these folks try to complain of abuses, no one believes them. They are delusional. No one follows up.
I am eager to talk more about working with folks with schizophrenia but realize I must end this blog at some point. There will be more to come.
Jill Presnell is a Counselor in Northeastern Pennsylvania as well as an advocate for the provision of recovery oriented mental health services.