One Thursday this past July, my husband and I drove to our county’s police academy training facility. A uniformed policeman let us inside. We were led through several hallways to a conference room where I was scheduled to speak on behalf of the local National Alliance on Mental Illness Office.
Standing at the front of the room, I began by sharing all of my accomplishments, including my recent graduation from a Columbia University certificate program, the classes and workshops I teach, and my 25 years of marriage. Then I added: “I have chronic paranoid schizophrenia. That’s why I’m here today to talk to you.”
I spoke for nearly an hour about the five types of hallucinations, when I recognized the voices I heard as God, Jesus, and the Holy Spirit, and how my paranoia often made me think my food was poisonous. Did. I also touched on the delusions I had during my mental illness.
Police officers often encounter people in mental health crises in the course of their work, so it is important to hear from people who have lived experience with severe mental illness. I want them to understand that mental illness can cause people to behave abnormally, but often these people can be successfully treated.
To the best of my ability, I answered the officer’s questions about all aspects of living with schizophrenia. Many people have thanked me for coming and for my vulnerability towards this diagnosis, which still has a lot of misinformation and stigma.
I kept my mental illness a secret from my friends, in-laws, and employer for about 20 years. Since 2015, I’ve made a portion of my income by sharing details of what it’s like to live with schizophrenia. I speak to law enforcement, nursing students, people studying marriage and family therapy, and treatment facilities for people living with similar diagnoses.
Sharing my story can help certain groups better understand mental illness and help people living with mental illness feel less alone in their journey. The details I share will help professionals better understand what it’s like to spend time away from reality.
In my late twenties, I started to think that people were out to get me. As my paranoia increased, I stopped eating and sleeping. A relative took me to the hospital, but it took several days for me to agree to hospital treatment. My hospitalization led to a diagnosis of bipolar disorder with psychotic features. At the time, I felt a lot of denial and shame about the labels that had become part of my identity.
When I told people that I had a mental illness, especially the men I dated, they almost always disappeared from my life. I remember one guy saying when he ended things for the day, he said, “I can’t stand this,” but I never showed any symptoms around him. . I learned early on that mental illness destroys many relationships.
When I met my current husband, he too was reluctant about my diagnosis. When we first dated, I didn’t follow my medication and had severe symptoms that came and went. I tried to commit suicide twice and had frequent episodes of hearing voices, paranoia, and delusions.
But we stuck together and continued to support me even after he witnessed my symptoms. Not too long into our relationship, I started taking my treatment more seriously and was able to focus on laying the foundation for our soon-to-be marriage.
By this time I had learned not to tell anyone about my illness, so it became a secret between my husband and me. Her family knew, but she didn’t tell her husband’s family. We didn’t tell his co-workers or the friends we started dating after we bought a condo near the Los Angeles city limits.
It wasn’t just the prejudice and rejection I experienced that kept me silent about my struggles. It was also internalizing the messages society gave me about my condition and the people living with it. I thought I wasn’t very likable or likable, and that people I knew would consider me “crazy.”
“When I told people that I had a mental illness, especially the men I was dating, they almost always disappeared from my life.”
I had almost a decade of stability, working full time, taking classes, and serving on city council committees. I had a friend who I worked with, hiked with, and played racquetball with, and her husband and I traveled abroad regularly.
My psychiatrist then decided there was something wrong with my diagnosis and stopped all my medications. Within a year, I was hallucinating 24/7, unable to sleep, and completely disconnected from reality. I remained insane for six months until doctors stabilized my condition again.
New doctors diagnosed me with chronic paranoid schizophrenia. It hit me and my husband like a punch. The day we heard the news, we hardly talked. I remember her husband finally saying, “You know what? She said, “Well, there’s nothing new about you today compared to yesterday.” She heard those words and told me that even with this new information, he wasn’t going anywhere. I reassured her.
But we became even more secretive and even more protective of our private lives and the reality of my illness. If people rejected me when I told them I was bipolar, I imagined it would be even worse if I told them I was schizophrenic.
I kept this new secret between my family and I for almost 10 years until my psychiatrist gave me an assignment to tell just one friend about my diagnosis. My psychiatrist recognized that if I kept secrets about things that had a big impact on my life, it would prevent me from really getting to know other people. She knew that hiding would isolate me from others.
My husband and I talked about it for weeks. We’ve lived with our illness for so long that we’ve gone back and forth about whether or not we want to tell anyone about it. We talked about losing friends. We talked about the fact that if you tell one friend, many more will know.
We finally decided to tell the social worker we had been working closely with at the YWCA.
At brunch, I said this, my voice shaking. “I have schizophrenia.” At first he was a little confused and asked a few questions, but the conversation never took over our brunch date. That night, I wrote an essay for an online magazine about my experience with mental illness. When this book was published, I posted a link to it on Facebook. That’s how my in-laws, co-workers, and even friends who have known me since high school learned that I was living with a mental illness.
We lost some friends. I don’t know if they thought, “I can’t handle this” like early boyfriends did, or if they were angry that we were keeping important parts of our lives away from them. I wonder if it hurt some people’s feelings to know that they weren’t as close to us as they thought because we weren’t living a true, fully open life. I think about it often.
I felt hurt and scared to finally reveal my secret, but I also felt a great sense of relief. For the first time since my early 30s, I was able to talk about myself without hiding my reality and who I am.
Since then, I have continued to write about life with schizophrenia, and telling my story led to a role at NAMI where I stood in front of dozens of police officers in the midst of a mental health crisis. I ended up explaining what it was like to be inside.
My secrets have become my tools and I can no longer hide them. I talk about it every time someone asks me or whenever mental health comes up. I feel like I’m taking advantage of a difficult situation to make a difference in someone else’s life. It gives meaning to my experience with schizophrenia and makes it not completely negative.
In 2023, I will be less prejudiced and more curious than in all the years I lived apart, cut off from real intimacy with my relatives and friends. I am daring to be myself, who I am, and use this once closely guarded secret to hopefully make the reality of mental illness a little less difficult for people like me.
If you or someone you know needs help, call or text 988 or chat at 988lifeline.org for mental health support. Additionally, you can find local mental health and crisis resources at dontcallthepolice.com. If you are outside the United States, please visit the International Association for Suicide Prevention.
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