Anosognosia is when individuals lack insight into their own behavior, symptoms and illness. Too often in psychiatric care, mental health professionals assume individuals with schizophrenia are not capable of talking about their symptoms due to their anosognosia. As a result, the mental health industry decides for these individuals what is best for them: strapping them down to tables while they are episodic, choosing medications without the individual’s consent or de-prioritizing any connection to the person inside of the disorder.
When I was a child, I watched multiple family members go through this experience. My aunt lives in a nursing home, where she receives visits from my father and the staff who encourage me to just, “play into her delusions,” so I don't upset her. My uncle, her brother, died from schizophrenia (as suggested on his death certificate). And my uncle on my mother’s side was left alone throughout his life, and I would see him wandering the house having conversations with his voices. None of them received the care they needed.
It became very obvious to me that if I developed a psychotic disorder, I could have a high chance of being neglected in care too. So when I began to show symptoms when I was 16, I hid and denied it. I didn’t want anyone to have more control over my behavior than I did. I trusted the mental health community enough to let them know that I had post-traumatic stress disorder (PTSD), depression and general anxiety, but not until seven years later did I tell a psychiatrist that I was hallucinating.
Overcoming My Denial
Ironically, the psychiatrist I had when I was in high school noticed I needed a mood stabilizer, so he put me on an antipsychotic for five years. That hid the psychotic symptoms so much that I could further my denial even more, and I did. A few years ago, I went off all four of my medications. It was then that I had to face my symptoms: a raging cluster of mania, depression and hallucinations all at once.
When I was off my medications, it was a daily, sometimes hourly, dose of hallucinating voices. These voices would berate me, yell at me, and tell me to murder myself and do terrible things to my loved ones. I also had the delusion that I was Jesus. I posted Facebook statuses that a friend later told me looked like “word salad.” Despite trying my best to hide my symptoms, a few saw through my symptoms and ended up berating me for being an “irresponsible schizophrenic.” I still denied it.
I went to a psychiatrist who specialized in functional medicine. His philosophy was whole-body care. His treatment was for me to live a healthy lifestyle and only introduce medications if I agreed to them.
One session we were speaking about my behavior, and he told me that the front desk noticed I had behaved strangely when I walked past them. He also mentioned that he had been forwarded an email about my paranoia of a company stealing my idea about being Leonardo da Vinci, to which I demanded that I must be compensated for. He said, “Sarah, I think you have a psychotic disorder.”
My thoughts immediately stopped. I became sweaty in the hands. I felt too ashamed to look at him, so I looked at the plant in the corner. That was the first time someone had ever told me something so confrontational about something I had internally stigmatized so severely. That was the first time I heard someone speak of my psychosis in a direct manner.
Learning to Cope with Psychosis
I slowly started to understand that I have a very severe mental illness. I could no longer deny it. So instead, I wanted to find a way to cope with it.
When I started accepting my condition, and observing it, I noticed my psychotic episodes operate in four stages.
A trigger happens, and my reality starts to feel like it is melting. I become off balance and a slow denial of reality starts to creep up over me. I start to deny basic facts about existence. I am not real. This world is not real. It is all a simulation.
It progresses into delusional beliefs. I am stressed from the episode and symptoms as much as I am from the stress trigger itself. I start to reach out to imaginary creatures. I believe aliens are real. I don’t talk to them yet, but I know there are entities out there that are communicating with me, and that I am “special.”
I am in a full-blown psychotic episode. I hear voices, and they are impacting me emotionally. I feel the pain from their insults and abuse. I experience them as if it is my abusive mother talking to me like I am trapped in a room again with nowhere to go.
I am psychotic and there is no way for me to come back except to wait out the episode. The only inkling I have to reality is the feeling that something is wrong. Otherwise, I believe every delusion I have is right. This is the point my anosognosia kicks in full gear. “I’m not sick. This is all real.”I try to sleep it off to make it go away.
What I have realized is that my rationality does not entirely go away during an episode, contrary to what the stereotype portrays. I am able to use the same grounding techniques I use with my PTSD. I go to a sensory-deprived room when I am hallucinating and quietly calm myself down. I learned that it does not have to be a chaotic, out of control experience every time I have an episode—it doesn’t have to be so scary.
Another helpful strategy is for my loved ones to remind me who I am, and to remind me what reality is. Carrying the internal compass back to reality has really lessened the impact of anosognosia on my schizophrenia more than anything else. I trust others enough to tell them my delusions. They gently remind me that everything is okay. It is just my disorder speaking. And I no longer deny its existence.
Sarah is a writer who specializes in skepticism and mental illness. She has been published in Free Inquiry, Huffington Post, and Eclectica Magazine for her human rights, skeptics commentary and creative nonfiction. Her education is in psychology and neuroscience, and she briefly worked in a neuroscience laboratory She now works as an analyst at a law firm in St. Louis, where she also speaks for NAMI's Ending the Silence program.
We’re always accepting submissions to the NAMI Blog! We feature the latest research, stories of recovery, ways to end stigma and strategies for living well with mental illness. Most importantly: We feature your voices.
Check out our Submission Guidelines for more information.