Over time, the meaning of my diagnoses has changed for me. I have gone through a natural progression of originally being really attached to the diagnosis and to diagnostic language whereas I’m now at a point where I don’t use those terms as much to describe what I’ve been going through.
When I was first hospitalized I was given a diagnosis of schizophrenia, which was incredibly alarming to me. During this hospitalization I was still in a really foggy state of mind and I was struggling to take care of myself and complete basic daily tasks. I was exhausted and was trying to wrap my mind around what had happened to me and the year and a half long episode I had been through where I starved to a point of weighing 125 lbs in my first hospitalization, I thought I was a messiah who was going to save the world, I believed in telepathy, and I only slept two to three hours per night.
I heard the word schizophrenia but didn’t really resonate with it’s meaning. The meaning I had for this term was associated with pop culture movies where people were screaming and yelling and where they were in extreme states of distress and also with the media where news anchors frequently highlighted moments where people with schizophrenia had done bad things. The meaning I had originally associated to the word did not match my experiences mental health wise, so there was a disconnect and the diagnostic language didn’t make sense to me. Having this disconnect at times caused me to repudiate the diagnosis because I didn’t think of myself in the framework from which I had defined the diagnosis and I also didn’t want to either.
After having a second mental health episode, I was given a diagnosis of schizoaffective disorder bipolar type which I also don’t really like using to describe myself. After this second episode I had a doctor who was fairly clinical steeped, and who is still a really good doctor, but I became attached to using clinical language because I thought it was the professionally correct way of talking about myself. My doctor sometimes used clinical language and he sounded like he really knew what he was talking about, so I perceived clinical language as a language of expertise on mental health struggles and I adopted it into my vocabulary. Another element of this was that we were hoping the clinical language would give me space from the mental health experiences I had been through. There were a number of adverse social interactions I had during my episodes so in the beginning it felt safer to attribute these to the diagnosis which took the onus off me. This worked for a while but I got to a point later on in my recovery where it felt pejorative to talk about myself with clinical language. The clinical language also didn’t feel as accurate.
My original explanation was that schizophrenia was some anomalous being that was lodged in my mind causing my brain to be dysfunctional. Sometimes it physically feels like there is a weight sitting within the forefront of the mind causing my thinking to be altered and the words I’m speaking to not come out right. People sometimes refer to words and actions people with psychosis are saying and doing “as the psychosis” and not the person.
I used to think of things this way as well until I came to a better understanding of the internal processes at work. From having had traumatic life experiences, the meaning I had created in conjunction to normal life experiences such as talking to people, being in group settings, being out in public, having people in close proximity to me, talking about certain subjects, all felt terrifying for me because these situations brought back thoughts and emotions of trauma. When these traumatic thoughts and emotions welled up under the surface it caused my mind to be dysfunctional, mainly because I was in a flight or fight mode. These experiences also created fear, hatred, and judgment. When these flight or fight instincts along with fear, hatred, and judgement arose, my brain simply hasn’t been able to function with all these negative and dysfunctional thought constructs happening. This has caused phenomenology such as referential thinking, thinking I was a messiah, having higher or lower emotional ranges, and other symptoms as well such as seeing visions and hearing things at times. The brain can only handle so much stress and when it gets overloaded with problematic thinking it becomes dysfunctional.
Defining psychosis to me is basically understanding there is problematic meaning associated to normal everyday situations because those situations trigger thoughts and emotions of trauma. There is also problematic meaning because during my episodes I created thought constructs that were dysfunctional as a means to protect myself from the trauma. These thought constructs then become everyday behavioral patterns until I unlearned them. Getting healthier has been a process of deconstructing problematic meaning and reconstructing the meaning of these situations in healthier ways. As I’ve continually deconstructed more of these internal thought processes, everyday experiences such as going out in public, making friends, having conversations, and being around other people have become much easier.
Thinking more in terms of self-perception, it’s been much easier to look at my life in terms of trauma as opposed to clinically identifying myself. In my day to day life and even in my work as a peer specialist I don’t identify as someone with schizophrenia. I just identify by all the positive life experiences I’ve had and all the good things I’ve been saying and doing. In prior years when I used clinical terms there was a stigma I had associated to them and this threw off my self-perception. I felt more like a science experiment and a problem that needed to be fixed when I thought of myself in clinical terms. Using clinical language to describe my life experiences felt dehumanizing in a lot of ways.
When I became a peer specialist I learned to describe my experiences in common terms. Using everyday language to describe what I had been through gave me deeper insight into the internal thought processes that were happening. In prior years if my mind was fogging up or if I felt a great amount of fear and pain in a social situation I thought that it was just psychosis and I would dismiss it. At this point I can ask myself how is this situation connected to past experiences and how do I help myself realize that there is nothing to be afraid of or hateful of within this situation so I feel safe, calm, and at peace. As you might see, the latter explanation leads to information that is useful and understands the condition whereas using the term psychosis stopped the inquiries.
If I had kept simply stopping at the point of attributing my experiences to the term psychosis and assuming my struggles with social cognition and other cognition were just some anomalous being in my mind I never would have gotten out of the confines of the trauma. Realizing that my mind is malleable was the most powerful point in my recovery because this was when I realized I could unlearn my experiences and by changing the meaning of thoughts and experiences within my mind I could find ways to make my brain function better and to help myself feel better emotionally. Without this, I would not have progressed to where I am today; having a full life where I live independently, work full time, and I’m close with my family and friends.
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