On a Thursday this past July, my husband and I drove to our county’s police academy training facility. A uniformed officer let us in. We were escorted through several hallways and into a conference room, where I was scheduled to speak representing our local National Alliance on Mental Illness office.
Standing at the front of the room, I introduced myself first with all my accomplishments ― my recent graduation from a certificate program at Columbia University, the classes and workshops I teach, and a 25-year marriage. Then I added: “And I live with chronic paranoid schizophrenia, which is why I’m here to talk to you today.”
I spoke for nearly an hour about the five types of hallucinations, the time the voices I heard identified themselves as God, Jesus and the Holy Spirit, and how I frequently thought my food was poisonous due to paranoia. I also touched on delusions I’ve had while psychotic.
It’s important for officers to hear the information of someone with lived experience of a severe mental illness, because they so often encounter people who are in a mental health crisis in the course of their duties. I want them to understand that psychosis can make people 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 about a diagnosis that still has a great deal of misinformation and stigma associated with it.
I kept my mental illness a secret from friends, in-laws and employers for almost 20 years. Since 2015, I’ve been making part of my income by telling the details of what it’s like to live with schizophrenia. I talk to law enforcement, nursing students and people studying marriage and family therapy, and at treatment facilities for those who are living with a similar diagnosis.
Sharing my story helps certain groups understand mental illness better, and helps those living with it to feel less alone in their journey. The details I share can help professionals better understand what it’s like to have a break from reality.
In my late 20s, I started to have thoughts that people were out to get me. As the paranoia increased, I stopped eating and sleeping. My relatives brought me to a hospital, but it was several days before I agreed to inpatient treatment. My hospital stay led to a diagnosis of bipolar disorder with psychotic features. At the time, I had a lot of denial and shame about the labels that became a part of my identity.
Telling people I had a mental illness ― especially the men I was dating ― almost always ended with them disappearing from my life. I remember one man saying “I simply can’t handle this” when he ended things that very day, although I had never shown symptoms around him. I learned early on that mental illness was a deal breaker for many relationships.
When I met my current husband, he also had reservations about my diagnosis. When we first dated, I wasn’t compliant with my medication, so I moved in and out of severe episodes. I attempted suicide twice, and had many episodes of hearing voices, paranoia and delusions.
We stuck together, though, and even after he witnessed my symptoms, he kept supporting me. Not too long after we got together, I began to take my treatment more seriously, and we were able to focus on building a foundation for our soon-to-be marriage.
By this time, I had learned not to mention my illness to people, 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 co-workers, or the friends we started to make after we bought a condo near the Los Angeles city limits.
It wasn’t just the stigma and rejection I’d experienced that kept me silent about my struggles. It was also the internalization of the messages society had fed me about my condition and the people who live with it. I thought I was less lovable and likable, and that people who knew would view me as “crazy.”
“Telling people I had a mental illness ― especially the men I was dating ― almost always ended with them disappearing from my life.”
I had a stable period lasting almost 10 years, where I worked full-time, took classes and sat on committees for our city council. I had friends I worked with, hiked with and played racquetball with, and my husband and I regularly took trips overseas.
My psychiatrist then decided there was something amiss with my diagnosis, and took me off all medication. Within a year, I was hallucinating 24/7, not sleeping, and having a total break from reality. I remained psychotic for six months before doctors could stabilize me again.
These new doctors diagnosed me with chronic paranoid schizophrenia. It hit me and my husband like a punch. The day I got the news, we barely spoke. I remember my husband finally saying: “Well, there is nothing new about you today from yesterday.” That statement reassured me that he wasn’t going anywhere, even with this new information.
We doubled down on the secret, though, and became even more protective of our personal life 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’d kept this new secret between us and my family members for almost 10 years when my psychiatrist gave me a homework assignment to tell just one of my friends about my diagnosis. My psychiatrist recognized that if I was keeping a secret about something that affected my life so much, it would hold me back from being truly close to other people. She knew that hiding was isolating me from others.
My husband and I talked about it for weeks. We went back and forth on whether we even wanted to disclose my illness to anyone, after living with it undercover for so long. We talked about losing friends. We talked about the fact that once we told one friend, more would find out.
We finally decided to tell a social worker I had worked with closely at a YWCA.
Over brunch, my voice shaking, I said: “I have schizophrenia.” At first, he was a little taken aback and had some questions, but the conversation did not take over our brunch date. That night, 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 was how my in-laws, our co-workers, and even friends who’d known me since high school found out that I was living with a mental illness.
We lost a few friends. I’m not sure if they thought “I can’t handle this,” like those early boyfriends, or if they were upset that we’d kept such a significant part of our lives from them. I often wonder if it hurt some people’s feelings to know that they were never as close to us as they may have thought because we were not living an authentic and fully open life.
I felt vulnerable and scared about finally disclosing my secret, but there was also a massive relief. For the first time since my early 30s, I could talk about myself without hiding big chunks of my reality and who I am.
I’ve been writing about life with schizophrenia ever since, and telling my story led to the position at NAMI that had me standing in front of dozens of police officers and explaining what it’s like to be in the middle of a mental health crisis.
My secret has become my tool, and I no longer hide it. I talk about it each time someone asks me to, or any time mental health is the topic. I feel like I am using a difficult situation to make a difference in other people’s lives, which gives meaning to my experience of having schizophrenia, and turns it into something that isn’t entirely negative.
I run into less stigma and more curiosity in 2023 than in all those years I lived splintered and cut off from true intimacy with relatives and friends. I am boldly myself ― my authentic self ― and I’m using that once tightly held 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 988lifeline.org for mental health support. Additionally, you can find local mental health and crisis resources at dontcallthepolice.com. Outside of the U.S., please visit the International Association for Suicide Prevention.