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"I want to go home," I say to the hospital psychiatrist. I miss my husband, and I do not understand what is happening.
“Subtract 7 from 100, then keep going,” says the psychiatrist.
"But I am a college graduate. I am finishing my PhD" I pleaded.
He looks at me. On the best of days, I wouldn’t be able to fulfill his request. Numbers were never my strength.
I am silent. He shrugs.
“It’s a simple test of concentration,” he states. “Now, can you join the others?”
I had worked in community mental health. I had earned an MSW and PhD in social work. As a first-generation college student coming from a low-income background, I was determined, resilient. But, beginning in 2010, a year before I earned my PhD, I experienced my first psychotic episode. I was involuntarily hospitalized. Over the years, as doctors worked to adjust my medications, I experienced hospitalization seven times. I have been hospital-free since 2015. But, I was both a professional and a "professional" patient. I finished my dissertation and worked full-time even as I lived through this health crisis.
I currently work as a director in a disability organization. I have experienced the challenges of both health concerns and stigma. And now I sit, telling my therapist how psychiatrists - and the mental health system generally - really does not understand psychosis.
Psychiatrists, I felt initially, had cavalierly prescribed medications, then just as cavalierly changed them. Eight years later, I am thankful for the set of medications that allows me to live meaningfully. But initially, my body rebelled against the first prescription and my nervous system reeled. I went to the ER because I was in so much distress, but nothing could remedy the reaction until the medication left my system. My psychiatrist was confused. "Why did you go to the ER, what did you think they could do?" he asked. "I just wanted the sensations in my body to stop," I explained.
It's difficult when the search for a cure also disrupts your body and mind.
Yet, faced with psychosis, I was overwhelmed and scared. I thought I was receiving clues, from lights, TV, music, my computer, my phone. Even if I took a walk outside, signs and orange cones seemed to be clues to a greater puzzle. I thought that if I took a wrong turn, failed a test, failed to understand the meaning of a song lyric, horrible things could happen to my friends and family, or I would be personally punished by God. Most of the scenarios in my head referenced abusive experiences I had endured in the past, now amplified.
The first time I was brought to an ER, I was put in handcuffs, for being sick. I was only confused and quiet. At one point, I screamed in an ER while I was awaiting placement in a hospital because I believed the Devil was taking over the world. Rather than ask why I was distressed, a team of people rushed in, tied me to the gurney, and injected me with Haldol. My husband had been on his way to see me, and I am so sad that he had to witness me in that position.
Psychosis does not end when the medication finally works, if it does. At least, it did not end for me. My mind remained confused. Processing information slowed. My nervous system was hyper-reactive. I did not feel fully recovered for at least a year.
No one knows what caused my break, and initially I was told it was temporary. Eventually, I came to understand my experience as post-traumatic stress disorder with psychotic features. And the condition was not temporary - despite the optimism of some of my doctors, I eventually had to accept my condition as permanent. Also, with each attempt to take me off medications and despite my best efforts, I could not recognize my own return to psychosis. Each time, I lacked this insight. One psychiatrist asked me "You do know the devil is not taking over your soul, right?" He was very kind and concerned. I responded, "I wish I did, but no, that's what I believe."
What do I wish people understood better given these experiences? Here are five main points:
1. Even if the person cannot express it, they are likely terrified, and will probably remember afterwards what happened to them when they were psychotic.
Many times people with psychosis are only depicted as scary, violent or dangerous. However, someone experiencing psychosis is more likely to experience violence than perpetrate it. I was terrified. I remember the beliefs I had when I was psychotic, and how people treated me. The people who were most helpful were not scared of me and recognized it was me who was really afraid.
2. Ask someone what is making them afraid. Do not jump to restraints.
If someone experiencing psychosis screams or yells but is nonviolent, ask them why they are afraid. Reassure them you will help keep them safe. Ask if they would like something to calm them - their phone with music, a pillow to hold, or someone close to them to wait with them.
3. Psychosis does not end when the medications work or other interventions work.
Psychosis is traumatic. It's difficult to feel like you cannot trust your mind. The experience should be treated like a potential trauma in itself, as should involuntarily hospitalization. The mind and nervous system need to recover. I started running. This allowed me to discharge anxiety and feel strong again. One hospital I stayed in had a garden and exercise equipment - which was much better than restraints.
4. Remember the person experiencing the episode is a human being.
My initial story about the doctor who dismissed me shows that too often, professionals treat patients in a dehumanizing way. It probably never occurred to him I was lonely and that I really was finishing my PhD. Also, it may not have occurred to him that I really did not understand what was happening. Take the time to orient the person to the situation. A person is not their symptoms. People receiving treatment want to be recognized as valuable.
5. Psychosis also traumatizes family members.
My husband so often was left baffled about what was happening to me. He called social workers who never returned his calls. He wondered why doctors were in such a rush when he wanted answers. He was scared too. Family members deserve kindness and support.
I am a mental health professional who has been recovering for eight years. And although I have had painful encounters with stigma that have affected my trajectory as much as the illness itself, I believe those of us in the field that have experienced psychosis can contribute an important voice. Those who experience psychosis deserve a holistic and human approach, one that builds upon the person's resilience, rather than further depleting it.