First and foremost, I want to say that what I have chosen to write about is very hard for me to express and is in fact very painful. I am still unsure how to put it into words as describing psychosis is almost impossible, much like trying to accurately describe a dream.
When I was a child I was described as peculiar, with an overactive imagination. I had many imaginary friends and would often hear my name when the wind blew. This was not considered odd because many children live in fantasy worlds. As an adolescent I was very rebellious and spent most of my days riding skateboards, idolizing musicians and expressing my dissatisfaction with society. I became addicted to heroin at 16 years old. Once I graduated high school, I attended a state college but failed out after one semester.
Around this time I started feeling as though I was being followed. I continued to try and make a life for myself by taking classes at a vocational school and working nights at Stop and Shop. My home life became intolerable and I knew that something had to change. I decided to quit using heroin by getting on Suboxone, and I went back to college in Vermont. This is when things started to get bad.
It started very slowly and then came on very rapidly. Over the course of about nine months, I became increasingly paranoid about cars following me. I felt as though I was being watched through cameras, which resulted in me destroying my electronics. I stopped eating for a few days due to a delusion that I had evolved to the point where I no longer needed food or water in order to live. The voices that I heard began to bother me to the point where I would punch myself in the face as a way to get rid of them. I would take multiple showers a day, turning the water up to maximum heat and then to the coldest setting because it made the voices lessen.
Other students became alarmed by the way I was acting and reported it to the school directors. I then began to believe that people were entering my dorm room in order to get information on me. I believed that if I was unable to escape, I would be killed. But I did not feel like I could leave because I thought I was constantly being watched through cameras. I continued to hear a loud pounding sound on my windows and door, but when I went to answer no one was there. It was like something out of a horror story.
Eventually one night I left my dorm room, got in my car and drove 110 miles an hour until I ran out of gas. I then got out of the car and started running until I collapsed. The police eventually picked me up, and I was put into a hospital where I was restrained and injected with Haldol and Ativan.
When I received my diagnosis of schizophrenia, I thought about the consequences of living with this illness long-term versus committing suicide, and how either choice would affect my friends and family. After long deliberation, I decided that I would try to make it for “as long I could hold on for.”
The events that follow are much more uplifting. I quit Suboxone and I slowly started to return to society. With the encouragement of the doctor that I was working with along with outreach supports, I graduated services, finished college, got off of SSDI and started working full time. While I was in school I had been unable to obtain an internship due to a drug arrest from when I was 17 years old, but I contacted my previous outreach worker and she was able to set up an internship for me. I began to do a lot of volunteer work until I was hired as relief staff. I then became a full time direct care employee at a group home.
Eventually I became an outreach clinician myself. An outreach clinician is someone who supports individuals with mental illness and substance use to remain independent in the community. Being an outreach clinician had always been my overall goal—to be able to help people the way that I was helped when I couldn’t help myself.
I now have my own apartment and I am in a loving relationship. I no longer show any symptoms of schizophrenia and I do not hear voices. I have not taken any medications in over five years. I can honestly say I am content in every way with my life. Something that I was told by many people was impossible.
Looking back at the stigma I have faced, I have come to realize that I was very repressed. My worst fear was that people would find out that I was sick, and I did not do a lot of things because of it. I felt as though I was a freak and it caused me to spend most of my days isolated. I was deathly afraid that people would come to realize that I was a “schizophrenic,” so I did my best to hide it in any way that I could. Despite my best attempts, some people did find out because it is human nature to gossip. When I disclosed what I had been through, I noticed that people were afraid of me, and on more than one occasion I noticed that they did not want me around their children.
To this day there is a part of me that identifies as a six foot one, one hundred and eighty five pound unmedicated schizophrenic male with a history of heroin addiction—something so terrible that it is second only to a terrorist, a child molester or a wife beater.
The struggle that I now face with stigma is the opposite effect. People now don’t believe me when I tell them of my diagnosis. Many people have told me that such a dramatic recovery is not possible and that I must be embellishing my story. I have had people refer to me as “A Best Kept Secret” (a reference to a photo scavenger hunt at the agency I work for). I have felt shame for the fact that I was getting money from SSDI for the time I was out of work due to the side effects of the medications. But the most common things that I hear is, “Well… you became psychotic because you did a lot of drugs.”
The truth is that I stopped using hard drugs when I decided to go back to college. I did, however, continue to use marijuana quite frequently prior to my psychotic break. To me, marijuana felt like a medication because when I smoked it caused the voices to calm down, but about an hour into the high they would return louder than ever. Coming off of marijuana was even more difficult for me than withdrawing from heroin.
Many of my family members have also suffered from psychosis and I can honestly not attest to why I recovered and they did not. But I know that I have been extremely lucky with the services that I’ve received. After working in the field, I have found that the majority of people in the mental health system are not getting adequate care like I received during my first psychotic episode.
I was lucky enough to have a doctor who took a nontraditional approach to schizophrenia and worked with me on coming off of medications. He met with me weekly for the first few months that I was out of the hospital. When I was first put on Haldol I experienced blurred vision and thought I was going blind, which caused intense fear especially when hearing voices. I fidgeted back and forth constantly, shuffling my feet, which made me embarrassed to go out in public. Zyprexa caused me to gain fifty pounds in six months. I became so lethargic on Risperidone in combination with Suboxone that I slept seventeen or eighteen hours a day.
Over the course of several years, I tapered down my medications until I was on only a small dose of Abilify. I did not see any effects from Abilify, but I continued to take it in fear of what would happen if I stopped. When I did stop, I noticed no difference or increase in symptoms in any way, and this has remained consistent over the course of the past five years.
I want people to understand that my recovery did not just happen. I had to work extremely hard to get to where I am today. After my psychotic break, I started having PTSD symptoms and it became hard for me to leave the house. I was able to get out for an hour each day. I worked my way up from having a difficult time taking one class a week, to working full time and being on-call for four residential programs with over 60 clients in outreach. I made changes to my diet, started exercising regularly, learned how to cope with panic attacks and used reality testing. I also continue to recognize when I am starting to struggle.
It has been very hard for me to get to where I am today. I did not just fall into my job, my relationship or my lifestyle. Every day I get up and feel thankful for everything I have. There will always be a lingering thought in the back of my mind that I may lose my sanity, but as of today I can honestly say that I feel as though I am cured of schizophrenia.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.