One Thursday last July, my husband and I drove to our county’s police academy training center. A uniformed officer let us in. We were escorted through several hallways and into a conference room, where I was to speak on behalf of our local office of the National Alliance on Mental Illness.
Standing at the front of the room, I introduced myself first with all of my accomplishments: my recent graduation from a certificate program at Columbia University, the courses and workshops I teach, and a marriage of 25 years. Then I added, “And I live with chronic paranoid schizophrenia, which is why I’m here to talk to you today.” »
I talked for almost an hour about the five types of hallucinations, about when the voices I heard identified themselves as God, Jesus, and the Holy Spirit, and how I often thought that my food was toxic because of paranoia. I also talked about the delusions I had when I was psychotic.
It is important for officers to hear information from someone who has experienced a serious mental illness, as they very often encounter people in mental health crises in the course of their duties. I want them to understand that psychosis can cause people to act erratically, but that in many cases these people can be treated successfully.
To the best of my ability, I answered the officers’ questions about all aspects of living with schizophrenia. Many thanked me for coming and for my vulnerability in the face of a diagnosis that is still associated with a lot of misinformation and stigma.
I kept my mental illness a secret from my friends, my in-laws, and my employers for almost 20 years. Since 2015, I have earned part of my income by reporting in detail about what it means to live with schizophrenia. I speak to law enforcement, nursing students, and people studying marriage and family therapy, as well as treatment centers for those living with a similar diagnosis.
Sharing my story helps certain groups better understand mental illness and helps those experiencing it feel less alone in their journey. The details I share can help professionals better understand what it means to stray from reality.
In my late 20s, I started to think that people were out to blame me. As the paranoia increased, I stopped eating and sleeping. My relatives took me to the hospital, but it took several days before I accepted hospital treatment. My hospital stay 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.
Telling people I had a mental illness — especially the men I dated — almost always resulted in them disappearing from my life. I remember one man saying “I just can’t handle this” when he ended things that day, even though I had never shown any symptoms around him. I learned early on that mental illness was a deal breaker in many relationships.
When I met my now husband, he also had reservations about my diagnosis. When we first dated, I wasn’t compliant with my medications, so I went in and out of severe episodes. I attempted suicide twice and had numerous episodes of hearing voices, paranoia, and delusions.
However, we stayed together and even after witnessing my symptoms, he continued to support me. Soon after we met, I started taking my treatment more seriously and we were able to focus on building the foundation for our future marriage.
By this time, I had learned not to tell people about my illness, so it became a secret between my husband and me. My family knew, but we didn’t tell my husband’s family. We didn’t tell any of his coworkers or the friends we started making after buying a condo near the Los Angeles city limits.
It wasn’t just the stigma and rejection I experienced that made me keep silent about my struggles. It was also the internalization of the messages that society had transmitted to me about my condition and the people who live with it. I thought I was less likeable and likable, and that people who knew it would consider me “crazy.”
“Telling people I had a mental illness – especially the men I dated – almost always ended with them disappearing from my life. »
I had a stable period of almost 10 years, where I worked full time, took classes, and served on our city council committees. I had friends with whom I worked, hiked, and played racquetball, and my husband and I regularly took trips abroad.
My psychiatrist then decided there was something wrong with my diagnosis and took me off all medications. Within a year, I was hallucinating 24/7, not sleeping, and completely out of touch with reality. I remained psychotic for six months before doctors were able to stabilize me again.
These new doctors diagnosed me with chronic paranoid schizophrenia. It hit me and my husband like a gut punch. The day I heard the news, we barely spoke. I remember my husband finally saying, “Well, there’s nothing new about you today compared to yesterday.” » This statement reassured me that he wasn’t going anywhere, even with this new information.
However, we increased our secrecy and became even more protective of our personal lives and the realities of my illness. I imagined that if people had rejected me when I told them I had bipolar disorder, it would be even worse if I told them I had schizophrenia.
We had kept this new secret between us and my family members for almost 10 years when my psychiatrist gave me an assignment to tell just one of my friends about my diagnosis. My psychiatrist recognized that if I kept a secret about something that had affected my life so much, it would prevent me from being truly close to others. She knew that hiding isolated me from others.
My husband and I talked about it for weeks. We wondered if we even wanted to reveal my illness to anyone, after living undercover for so long. We talked about losing friends. We talked about how once we told a friend, others would find out.
We finally decided to talk to a social worker I had worked closely with at a YWCA.
During brunch, my voice shaking, I said, “I have schizophrenia. » At first, he was a little taken aback and had a few questions, but the conversation didn’t take over our brunch date. That evening, I wrote an essay about my experience with mental illness for an online magazine. When it was published, I posted a link to it on Facebook ― and that’s how my in-laws, our co-workers, and even friends who knew me from high school found out that I was living with a mental illness.
We lost some friends. I don’t know if they were thinking, “I can’t handle this,” like those first boyfriends, or if they were upset that we kept such an important part of our lives from them. I often wonder if it hurt some people to know that they were never as close to us as they might have thought because we weren’t living authentic, fully open lives.
I felt vulnerable and scared about finally revealing my secret, but I also felt immense relief. For the first time since my early thirties, I could talk about myself without hiding a large part of my reality and who I am.
I’ve been writing about life with schizophrenia ever since, and telling my story led me to a position at NAMI that required me to stand in front of dozens of police officers and explain what it means to be at in the middle of a mental health crisis.
My secret has become my tool, and I no longer hide it. I talk about it whenever I’m asked, or whenever mental health is the topic. I feel like I’m using a difficult situation to make a difference in the lives of others, which gives meaning to my experience of schizophrenia and transforms it into something that isn’t entirely negative.
I face less stigma and more curiosity in 2023 than during all these years when I lived divided and cut off from true intimacy with my loved ones and friends. I am boldly being myself – my authentic self – and using this once well-kept secret to hopefully make the reality of mental illness less difficult for others like me.
If you or someone you know needs help, call or text 988 or chat to 988lifeline.org for mental health support. Additionally, you can find local mental health and crisis resources at dontcallthepolice.com. Outside the United States, please visit the International Association for Suicide Prevention.
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