I will never forget how I wept when I was diagnosed with schizophrenia. I thought it changed who I was and how others would see me. It felt like a visible mark on me as an individual — something glaring that I had to hide from everyone around me. It was confirmed; I am not “normal,” and my life is not normal, and it will never be normal again. In fact, my life is over.
Getting a label like schizophrenia didn’t suddenly change my mental health symptoms or my health outcome. It was just a word. But in that moment of diagnosis, that word had a life of its own. That word was a living, breathing creature. I was sure that no one would ever see the real me again after hearing the word “schizophrenia.”
Thankfully, I can tell you that I could not have been more wrong.
What I have found, with time, is that this word is extricable from who I am, how I am perceived, my fate, my future and my legacy. I learned to separate my identity — my essence, my core — from this highly stigmatized word and mental health condition. Now, I perceive "schizophrenia” as merely a word — and nothing more. I do not feel like others see me through the lens of that word, and I don’t feel confined by it, either.
Hold Onto Your Dreams
When reckoning with my new reality and how to move forward with my life post-diagnosis, I knew I had to hold onto my dreams. I wanted to have a fulfilling career, find love, get married and become a mother — even though my situation was very serious, and there was no guarantee that I would ever be well enough again to reach those goals. I found power in being optimistic and holding onto my dreams against all odds, and this optimism and tenacity pushed me forward in the right direction. Like a rudder on a ship in a stormy sea, dreaming of your optimal outcome gives direction and hope.
These dreams for the future I wanted gave me the motivation, reason and clarity I needed to get better — even if it meant trying and failing. I realized this route, despite its challenges, is better than simply letting this situation happen to me; I couldn’t give in and let the word “schizophrenia” overpower me.
A major turning point for me was accepting that I have schizophrenia while refusing to let that word define me. I once read a powerful quote from someone living with schizophrenia: “Once you can say the word ‘schizophrenia’ out loud, you’re cured.” I love that. Half the battle with this illness is facing that word head on, so you can then take the proper steps to treat it. You have to face it first in order to move forward.
This was my first step in not letting this illness define me. I accepted my diagnosis, fought for my desired future, not settling for anything less, and I made it happen.
Remember Why You Matter
I needed to remind myself of all the ways in which I contribute to the world and people around me. With some time and reflection, I developed an unshakeable belief that I am alive for a reason and that I matter. I came to see how I am loved, which also helped me feel like I matter, especially to others. This allowed me to feel like part of a collective whole where I am needed.
After experiencing a stigmatized mental health episode, like my episodes of psychosis, it can be tempting to give into the isolation you feel. But you cannot lose sight of the fact that you are not alone in the world, and you can always be part of something greater. Your life belongs to a wider circle than just yourself, where you can always contribute positively and purposefully to the lives of others.
I have come to believe that my life and the way I influence people in a positive way gives me a higher purpose and larger meaning to my life. And I believe that we can all contribute to the world in this way, regardless of a mental health condition.
Build Your True Legacy
For many of us who are diagnosed with schizophrenia, the new label comes with a fear that this word is our legacy. We worry that once people hear the word “schizophrenia,” it is the one thing we will be remembered for. But I have learned to combat this kind of thinking and carve a different path for myself. We all have the ability to reflect and ask ourselves, how do we want to be remembered? What do we want our contribution to be to the people around you?
Author Maya Angelou said it so well: “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
For those who are grappling with a diagnosis, please know that you are so much more than a word. Your life experiences, goals, challenges and wisdom make up the person you are — a unique human being with infinite possibilities. There is so much about you that schizophrenia can’t touch or define, and that’s what makes you authentic and invaluable. That’s what gives you your identity.
Sarah Ryan is a writer covering mental illness topics like stigma, recovery and hope. She is a survivor of schizophrenia, and she is now a wife, mother and proud owner of two pitbull rescues. She is also an ongoing NAMI Wake County blog contributor, a NAMI Connection Support Group (CSG) facilitator and an In Our Own Voice (IOOV speaker) in North Carolina.